Katie, 12 yr old Llhasa Apso diagnosed with Cushings (trilostane)

[Mrs. J]

Hi everyone,

I have been doing ALOT of reading and research about this aweful disease as my dog Katie has been going through the testing for this. Now that we have a firm diagnosis, we all assume she has had this thing for many years unfortunately. For this, I feel stupid. :(

Anyway, I do not have her test results at the moment, Im sure I can get them if I ask, but she has been exhibiting many of the symptoms for years, but as most know some symptoms can mimic different diseases, we didnt know until now. Her excessive drinking/urination is finally what helped determine this.

My issue is this however, the vet is starting her on meds today and has recommended Anipryl. I honestly thought the Lysodren would be what the vet wanted, as that seemed the most common med, but she has decided on Anipryl. I guess apparently, from what I see here, not many feel it is effective?

I haven't yet talked to the vet today regarding her decision on this med, will be talking to her later tonight. I have only talked to the technician at this point, and she told me what the doctor wanted so far and the vet discussion will be later on this evening. They just wanted me to be updated as soon as possible as quickly as possible, which I am very grateful for. The vet has also given me her email address for constant communication.

You guys all seem awesome, thank you for being here! :)

[Mrs. J]

Ok guess I have an update. Just spoke again to the vets office and have found out that since this afternoon, they have now decided on Trilostane instead of the Anipryl.

This is a good thing???? Ugh... Im getting confused. :(

[StarDeb55]

Welcome to both of you! You have another Lhasa parents here. Unfortunately, anipryl is effective in only about 10-15% of pups who have in a lesion in a specific location in the pituitary gland called the pars intermedia. The fact that your vet wants to start with anipryl is a red flag for a lot of us concerning a vet's experience in treating Cushing's disease. My 1st Cushpup, Barkley, was successfully treated with lysodren for nearly 8 years, crossing the bridge at 15 from causes unrelated to his Cushing's. My little 15 year old Shih Tzu, Harley, was diagnosed 2 years ago. He is being treated with lysodren & is doing well. The other drug of choice is trilostane. I have never used it, so I will leave that for other other members who do. IMO, I would be asking the vet why they want to use anipryl, & not one of the 2 primary medications used to treat, especially since anipryl has such a low % of effectiveness.

If you could get copies of all of your pup's labs, & post the results for us, that would be great. Those results just help us to fine tune our feedback to give you the best advice possible. You have mentioned a couple of symptoms, the polyuria/polydypsia, (excessive thirt & urination). Does your little one show any other symptoms such as coat/skin problems, voracious appetite, muscle wasting, especially in the back end, pot belly, & repeated infections that are difficult to heal? Was thyroid & diabetes ruled out? I ask about these 2 things as their symptoms frequently overlap with Cushing's. Was routine labwork done such as a chemistry panel or urinalysis? We would be very interested in seeing just the abnormal results from any general labwork along with reporting units & normal ranges, from the UA, we would need the specific gravity result. Until you can post the actual results, can you tell us the name of the Cushing's diagnostic tests that were done? These may include a low dose dexamethasone suppression, ACTH, high dose dex, & possibly an abdominal ultrasound. Does your pup have any other health issues or is on any medication or supplements?

Don't feel bad about the delay in diagnosis. Cushing's literally moves at a snail's pace before it does its damage to a pup's internal organs. There are some reports in the literature that most pups go anywhere from 1 to as long as 6 years before being diagnosed. Once appropriate treatment is started, your baby should be able to live out their normal lifespan with a good quality of life.

We are here to help in any way we can. Looking forward to hearing more.

Debbie

I see you posted that the vet wants to use trilostane while I was typing. We have a lot of members who use this medication, so I'm sure other members will be along to comment on their experience.

[lulusmom]

Hi and welcome to the forum.

Please do ask your vet for copies of the tests that were done to diagnose Katie and post them here. I see that Katie has increased drinking and peeing but can you list all of the other symptoms that Katie has been experiencing?

Anipryl's efficacy is questionable and it is my understanding that the developer of the drug, Dr. David Bruyette, a reknown and respected endocrinologist, admittedly only prescribes it for dogs with mild symptoms or in cases where the pet owner cannot afford diagnostic and monitoring tests. It appears to help in cases where the dog has a tumor in the pars intermedia lobe of the pituitary but unfortunately a small minority of dogs have a tumor in this area.

UC Davis does not prescribe Anipryl for the treatment of cushing's at all as they have had little success with it. Basically, it's a big crap shoot as to whether or not it will help Katie, especially if she has overt symptoms. We do have a few members who have had good experience with Anipryl but the vast majority of members are treating their dog with Trilostane/Vetoryl or Lysodren. Both of these drugs are most effective treatment prescribed by vets that are experienced with cushing's. Does Katie have other underlying conditions that perhaps your vet feels may prohibit her from prescribing a more efficacious treatment?

I'm sorry for the reasons that brought you here but we're sure glad that you found us. You've found a great bunch of people that have walked in your shoes and know the frustrations and fears that most feel with a new diagnosis. With a proper diagnosis and effective treatment, Katie will be her sweet little self again and we're here to help you get there. Knowledge is the most effective sedative when it comes to cushing's but it's not something that you're going to get your arms around overnight so don't get frustrated if some things are as clear as mud for you. :D

Looking forward to hearing more about Katie.

Glynda

P.S. I guess I type way slow. Just saw your update and I'm happy to hear that your vet has opted to treat with Trilostane. I also see that Debbie posted while I was typing at not so breakneck speed. Please excuse the duplication.

[Squirt's Mom]

Hi Mrs. J and welcome to you and Katie! :)

I am one who completely supports the use of Anipryl for certain cases of Cushing's. My Squirt was on it for about 9 mos. and did wonderfully! Squirt's case is a bit of an oddity for Cushing's, however. Her vet wanted to try her on Anipryl to start and then move her to Lyso in time, if needed. Turned out her elevated cortisol was from a splenic tumor and once it was removed, her cortisol returned to normal, tho she does have a different form of Cushing's unrelated to cortisol.

Anipryl is effective at controlling cortisol for pups who have the pituitary tumor in the pars intermedia of the gland. The problem is that only about 25% of PDH pups will have the tumor located in the pars intermedia. So you can see one reason it isn't thought much of as a prime treatment. Lysodren is more effective, no question, but for pups with mild signs, who are unable to tolerate the traditional treatments and for some older pups, it really can help, especially with signs like the drinking and peeing.

I will give you some links on Anipryl that may help you understand it a bit better. And, of course, please ask questions, questions, question....about anything, not just Anipryl.

The side effects you may see are nausea/vomiting, restlessness at first, and loss of appetite at first. We used Pepcid AC for the nausea and then switched to Tagamet. She had no other issues with the med other than an occasional bout of nausea. I would caution you if Katie has an inappetence issue, then Anipryl may not be the best choice as it can cause anorexia.

Usually, the vet will want to try it for a period of 30 days to see how it is working. If the signs are still evident, then they will increase the dose for another 30-60 days. Then if it doesn't seem to be effective, the pup will be switched to Lyso, or Trilo. Our vet told us that 90 days would be about the extent of trying Anipryl. But it helped Squirt so much for so much longer!

I am so glad that you and Katie are here, tho I am sorry for your need to be here. I, too, spent many hours researching when Squirt was first diagnosed. The more I read the more terrified I became...plus confused, frustrated, overwhelmed, angry and oh so guilty. I was a total basket-case by the time I found these wonderful folks. They held my hand and gently led me along until I could begin to understand a tiny bit for myself and the emotions weren't so raw. Then they began to teach me.

The more I have learned, the more comfortable and confident I have become...and I am sure the same will be true for you as well. ;) There is wealth of info, experience, and knowledge here all yours for the asking...well, sometimes we give even when it hasn't been asked for. ;) You and Katie are not alone on this journey. You are family now, and we will walk with you every step of the way. Oh! We are a dang good bunch of old-fashioned hand-holders, too! Mine got down-right sweaty and wrinkly from all the support and love we got, and still do. Our hands, shoulders and ears too, are here for you anytime.

You are off to a great start with the researching (and with finding us! :D ) so just keep up the good work and remember, there is a whole group of folks standing by your side now.

Hugs,
Leslie and the girls - always

:eek::eek: The links! :D:D

Anipryl info*

http://www.pfizerah.com/product_overview.aspx?drug=AR&country=US&lang=EN&species=CN

http://www.marvistavet.com/html/body_anipryl.html

http://vetmedicine.about.com/cs/diseasesall/a/aniprylseniors.htm

http://www.lbah.com/anipryl.htm

http://www.selegiline.com/

http://www.petplace.com/drug-library/selegiline-hcl-anipryl/page1.aspx

http://www.drugs.com/vet/anipryl-5-mg-can.html


Response from Dr. Bruyette on K9C about Anipryl:
http://www.k9cushings.com/forum/showthread.php?t=483&page=2

[Harley PoMMom]

Hi Mrs. J,

Welcome to you and Katie from me and my boy Harley! I am so sorry for the circumstances that brought you here but I am so glad you found this forum! You are right, Cushings is an awful and dreadful disease that our sweet furbabies do not deserve to suffer with. But it is also a slow progressing disease, so one does have the time to get a proper diagnosis for their pup, which in your post you stated Katie got a firm diagnosis.

Please, do not feel stupid, many pups go undiagnosed for years, as this disease symptoms mimics others, and some vets attribute the symptoms of an elder pup to "old age."

It would really help us to see the results of all tests done on Katie. And what symptoms, besides the excessive drinking/peeing, does she display?

I am going to post some links to our Resource Thread for you, I think you'll find alot of very good information there about Cushings.

Please ask all the questions you want and we will try to answer them the best we can, ok. Remember, you are not alone on this journey, we are here for you and Katie.

Helpful Resources for Owners of Cushing's Dogs
http://www.k9cushings.com/forum/forumdisplay.php?f=10

Links to Cushings Websites (especially helpful for new members!)
http://www.k9cushings.com/forum/showthread.php?t=180

Love and hugs,
Lori

[Mrs. J]

Thank you SO much everyone! :) Although I am so so sorry that everyone here has a reason to be here, its nice to know we are not alone. (I hope that isnt taken the wrong way?)

I will get the test results, meanwhile, this is what her symptoms have been. For MANY years, she has had terrible skin infections, to the point where she has had to wear a collar almost non-stop because she can make herself bleed in less than 5 seconds, and that is NOT an exaggeration. We tried everything known to try and stop this from happening over the years. A few years ago, she was diagnosed with a thyroid condition, and the vet we had at that time thought that may be the answer to the skin problems but no, it was not. They have continued.

A few years ago, she also had major bladder surgery for calcium stones, which during my research have found that cushings can actually be a cause for that too. (Although I do have my suspicions that this was not the cause in this particular case). It has been 3 years now and she is completely crystal free. However, because of this, we have had her on special food and have long considered she was allergic to the food, therefore the skin issues!!! Now we are thinking, maybe not... (a little history on this is that years before this she was put on special food for another type stone so she has been on special food for many many years)

Ok, she shows signs of being a bit "lost" at times, a bit confused, which we found out are more signs. She has the potbelly on her, has had it for years.

Right now, the immediate issue was her excessive drinking/urination. The interesting thing here is that I brought her to a new vet (to get her shots a couple weeks ago) and told them about the water/urination issue, he wasnt even interested in that initially. He immediate attention went to her skin. He then called in another vet and they started asking a ton of questions and, well, here we are...

Thank you SO much !!!!!!

[Mrs. J]

Just a few questions after reading some of the threads here on the forums...

I am starting meds tomorrow and am very nervous. Im not really sure what I need to watch for. From what I see in some threads I have read (and admittedly I have not read everything, there is SO much info here), I am watching for loss of appetite and lethargy? Is this correct?

The reason I ask this is because Katie always sleeps about 21 hours out of 24, hahahaha...and her eating habits are as follows: Its hard to explain but she has never been a great eater, in fact in her younger days, she would not eat any dog food at all and became so picky to the point of having to be fed a complete people food diet!! Well let me just say that as soon as her first stone was observed, I stopped that mighty quick! However, she never did take well to the dog food, never mind the special food she is now on. Having said that, she does not get much of anything except that food so she now eats the dry version of it much more readily then she would have years ago, BUT the wet version she is still picky on and I feed her one dose and another half a day of it each day - by hand. The dry version, she will eat on her own and most of the time welcomes it, this is where the increase in appetite has been noticeable.

Now, the vet also told me today that I am wanting her to slow down on her appetite and water/urination consumption and these are things to watch for. But now Im confused because Im reading that lower appetite can mean a bad reaction? Help!!! :) Im also seeing that some say lethargy is a sign of a reaction - Katie is always resting! So Im again, confused! :(

Obviously, the water consumption will be something positive and noticeable, but from what I read the appetitie is a bad symptom of Cushings, but loss of some appetitie can also be a sign of a bad reaction? Ugh...Im so confused, Im sorry.

Ok the last thing is Im reading that most believe about a 14 day or so retest is needed, but my vet told me on the phone today 5-7 days retest, but then when I picked up the med, she changed it to 30 days retest. Im again - yes, you guessed it - confused.

For the record, she was put on 30 mg Vetoryl once a day. She is 28 lbs.

Thank you for anyone who can put up with me and my questions!

[StarDeb55]

Here is a link to the treatment & monitoring information for trilostane from our important information section.

http://www.k9cushings.com/forum/showthread.php?t=185

If you will look at the monitoring flowchart, it clearly states that the first ACTH, which we call a "stim" for short, needs to be done at 10=14 days after beginning treatment. It's also very important that when an "stim" is done that an electrolyte check be done, also. For your vet to suggest the first test at 30 days makes me question how much experience your vet has with trilostane. I think I would be asking for that information as I'm sure you don't want Penny to be his/her first pup to use trilostane.

When using either drug, you always want to be on the lookout for periods of severe inappetance, nausea, vomiting, & diarrhea. These are all symptoms of a possible low cortisol emergency, which you would need to contact your vet. We have a golden rule around here that you never, ever give either trilostane or lysodren to a pup who is sick, no matter what the cause. Now, monitoring for a simple decrease in appetite or water intake is not as important with trilostane as it is with lysodren. You should slowly start to see symptoms improve with trilostane.

I'm sure some of the other members who are trilostane users will weigh in on your questions, but I think I have at least gotten you started.

Debbie

[Mrs. J]

Thank you Debbie! I understand what you are saying about the stim test at 10-14 days completely, but how do I tell the vet this without her getting mad that I dont trust her with her recommendation? I will read the link you have provided, thank you very much. I did just read the whole pamplet that comes with the med itself, and it does say initial test after 10-14 days. I will make sure an electrolyte test is done too.

The vet does seem to be knowledgeable about Cushings, I hope I am correct. The reason I say this is because when Katie had her initial checkup, there was one vet initially doing her exam, and he then consulted with my current vet, where she is the one who ended up on the case (she is also the owner of the veterinary practice and has many many years of experience). I then found out after the first test that the other doctor had ordered the second test first and she had to be the one to step in and explain to me why that was not effective enough for a diagnosis and how it would be malpractice of her to diagnose based on those results alone (which did show Cushings). We then did the LDSS test.

Katie is currently on thyroid medication (vet even mentioned this could be fixed after Cushings is under control) and has been for years and is on antibiotic for her skin infection. (clavamox) I asked repeatedly if this would interfere at all with the med and I was told repeatedly no. Now Im SO upset and confused. I also asked a LOT of questions and she seemed pretty knowledgeable with answers, one of which was why she chose this med over others.

I really have no where else to go for my vet services, my old vet was over an hour away and twice the price and not at all knowledgeable about Cushings. This is why I switched to this vet as I was recommended here for various reasons (not Cushings at that time) but she is 30 min away and more in line with regular vet prices, and this is a 24/7 practice, so emergencies are covered and give me a certain comfort level. There is no other vet that is closer and I am at a loss and Katie has to be treated. At this point she is drinking SO much its almost uncontrollable and her outs are every 1-2 hours and hubby and I are getting NO sleep. Ugh. Everyone swears by this vet also.

Thank you again, I think Ill just rename myself to terminally confused :(

Edited to add: I might want to clarify also that Katie is constantly on antibiotics for her skin infections, they are chronic at this point so basicly what Im saying if I wait till shes off of them, I will never be able to treat Katie for Cushings. Realistically it will really never happen. Her skin is always infected, its in really bad shape and never heals for more than a few days at a time unfortunately. Have been searching for years for an answer, that is why we all were convinced it was food related, now we are thinking maybe not and hoping that the Cushings meds will eventually fix her skin which will be one small blessing.

Also editing to asking exactly what an electolyte test is. Thanks!

[StarDeb55]

Electrolytes=sodium & potassium.

I would suggest your print out the information from the link I provided you earlier, give it to the vet, & explain that you don't understand the re-test at 1 month as the drug manufacturer's recommendations clearly indicate that the first test needs to be done at 10-14 days. I would also tell them that you would be more comfortable following the recommended protocols.

Debbie

[Nathalie]

The interesting thing here is that I brought her to a new vet (to get her shots a couple weeks ago) and told them about the water/urination issue, he wasnt even interested in that initially. He immediate attention went to her skin. He then called in another vet and they started asking a ton of questions and, well, here we are...


Welcome to both of you!

Vaccinations are only to be given to healthy animals – says so right on the package insert. I just hope that that vet never proceeded on giving the ‘shot’ to your Katie. :eek:
I understand that learning about the dangers of over-vaccination, vaccinating sick/immune compromised and elderly dogs may not be at the top of your priority list at this point in time but once things settle down a bit you might want to start reading the information found at the following links …

Vaccinating Unhealthy Pets: Beware Reactions & Vaccine Failure (http://www.dogs4dogs.com/blog/2009/04/29/vaccinating-sick-dogs-cats/)

Re-Vaccination: Vaccination for Previously Vaccinated Dogs and Older Puppies (http://www.caberfeidh.com/Revax.htm)

By what you listed so far as ongoing health problems over the past years - if this where my dog, she would never receive a vaccine, no pesticides (flea/heartworm) and be on a fresh diet.
By special diet I am going to assume your dog is on a so called ‘prescription diet’ – grains, soy, chicken fat etc. are the first things that should be eliminated from a dogs diet that has skin issues.

Just like people – everything we put in/on our bodies does have an effect and needs to be processed/eliminated somehow by the body.

I do speak from personal experience – I too have a dog that used to scratch himself to shreds. Ear infections, secondary skin infections and as a result the steroid/antibiotic marry-go-round. The ‘cone’ the boots – me in tears – we did it all until I decided no more – obviously this is not working. It took about 1 year and now we are 2 years free of ear infections and any skin issues.

Best Wishes,:)
Nathalie

[Mrs. J]

Hi everyone :)

Once again, thank you so much for the advice and information, it has proved to be mighty valuable.

I spoke to the vet today and told her that I wanted Katie re-tested within the guidelines of 10-14 days instead of her recommended 30 days (and listed the various reasons discussed) and she was very receptive to it and has no problem in doing this. She also said they always perform an electrolyte test upon all retests, so thats not even an issue. She told me the reason she suggested the 30 day test was because she had some CE and this was taught and advocated there.

As far as Katie receiving her shots that I brought her in for originally, NO, she did NOT recieve the shots. The vet refused to give them to an unhealthy dog as stated above. She said they will take care of that after this is under control but until then, no way. I completely understand why as I agree with everything that has been said :)

As far as the food she is on, she is on a prescription diet based on the calcium stones she had 2 1/2 years ago. The vet does not want to address this issue until the Cushings is under control also, and again I completely agree with this.

We are hoping alot of these issues, as the skin issue, will clear itself up after we have this terrible thing under control. Today Katie had her first dose, so far so good, but obviously, one dose does not do much and we will keep you all posted as to her progress!!!

Thank you all, you are all awesome!!! :)

[Nathalie]

"As far as Katie receiving her shots that I brought her in for originally, NO, she did NOT recieve the shots. The vet refused to give them to an unhealthy dog as stated above. She said they will take care of that after this is under control but until then, no way. I completely understand why as I agree with everything that has been said"

If ‘take care of that later’ means vaccinate once the cortisol is under control using Trilostan I can only urge you to do as much research as possible on how vaccines work, possible ill effects to make an educated decision. Just because the cortisol is under control does not make Katie a healthy dog. Keep also in mind that the only vaccine required by law is Rabies and you should be able to get an exemption based on Katie’s health status.
You may find Dr. Richard Pitcairn's discussion (http://www.truthaboutvaccines.org/docs/10.pdf)informative.



"As far as the food she is on, she is on a prescription diet based on the calcium stones she had 2 1/2 years ago. The vet does not want to address this issue until the Cushings is under control also, and again I completely agree with this."

I agree, I would not rock the boat at this point in time. Please keep in mind many vets don’t know much about nutrition other then what they have been told by the sales reps.
A wholesome, fresh diet is the cornerstone to better health and can only assist in the bodies attempt to heal itself.

Did the vet say whether Katie’s skin issues are due to yeast, bacterial?

How is she doing today on her second day of Trilostan?

Nathalie

[frijole]

I agree to leave the food alone for now. My dogs were on special Science Diet food due to stones for YEARS. They did not do well on it - meaning they were lethargic and unhealthy. It prevented stones but didn't give them what they needed. I switched and never had any more stones and the dogs got energy, healthier skin and hair. So as was mentioned... vets aren't always up on nutrition. Science Diet is a revenue stream. :p;)

[Mrs. J]

I see what you are saying about the shots. Actually what happened was this: Katie was due for her shots. It also coincided with the fact that her drinking/urination was out of control (not to mention her aweful, aweful skin problems). So I brought her in with the mindset to get her shots and have the drinking/urination problem addressed. At that point, the vet said there was no way they would give shots until they addressed some of the other issues first. Testing then began on the Cushings. The vet nor myself have even addressed the shot issue since her firm diagnosis. So to be fair, the vet never said to bring her in to get her shots after the Cushings diagnosis, I just had assumed thats what happened (being uneducated at that point). I will definitely reacess that !!!! Thank you for the information!

As far as the food she is on, its not Science Diet. She is on Royal Canin diet, Urinary SO. We may look at that later on, right now our sole focus is the Cushings, as you would expect.

Katie is now on her fourth day of medication. So far so good. My husband and I may even be noticing a small decrease in her water consumption (is that even possible?), and a small decrease in her urination. Her appetitie is harder to judge, as her eating habits have always been strange (as I spoke about above). But so far they seem about the same, maybe, just maybe a small decrease? She may not seem as hungry as before, but I may reaching here. I am keeping a close eye on her. But all and all, shes as active as she always was and sleeps about the same as always, bottom line is she seems pretty much the same so far! No bad effects, nothing extraordinary on the good side! We are praying and keeping our fingers crossed at this point. :)

Edited to answer question about her skin: Katies skin infection is bacterial. Unfortunately, her skin is always infected at this point.

[Nathalie]

“As far as the food she is on, its not Science Diet. She is on Royal Canin diet, Urinary SO. We may look at that later on, right now our sole focus is the Cushings, as you would expect.”

Understandable – however, this stuff is full of fillers eg. ground corn – nothing wholesome in it – these ingredients can only make Katies skin issues worse.

Dog Food Reviews - Royal Canin Veterinary Diet canine Urinary SO 13 - Powered by ReviewPost (http://www.dogfoodanalysis.com/dog_food_reviews/showproduct.php?product=1518&cat=6)

Here are definitions of ingredients in pet foods:
Pet Food Ingredient Definitions: All Critters ~ Pawprints and Purrs, Inc. (http://www.sniksnak.com/ac/petfooddefinitions.html)

I don’t have any experience in treating with Trilostan, so can’t comment whether or not it is reasonable to expect decrease in symptoms after a few days.
I am hoping you will find a way to give Katie some relieve for her skin.
Best Wishes,
Nathalie

[littleone1]

Hi Mrs. J,

Corky and I would like to send you a belated welcome to this wonderful group of people.

Corky is being treated with Trilostane, and I actually started to see results within the first couple of days. I had the same question as to whether or not Trilo would have an effect in a short period of time. It does vary with each individual furbaby. The first improvements were with his eating and drinking. Within a short period of time, all of his clinical signs disappeared.

I hope Katie continues to do well with her treatment.

Terri and the Corkster

[labblab]

Hi Mrs. J,

A very late "Welcome" from me, too! I am so glad to hear that Katie is not exhibiting any ill effects from her trilostane, and may actually be showing some improvement. My Cushpup was also treated with trilostane, and like Terri's Corky, we were delighted to see improvements in his thirst and urination within just a couple of days of beginning treatment. So I hope the positive trend will continue for Katie. :)

I also wanted to add a couple of my own thoughts regarding vaccination. I totally agree that this is a "back burner" issue for the moment. And given Katie's age and depending upon her past vaccination history, it may indeed be the case that your vet will not feel as though re-vaccination is necessary for her or would be in her best interest. But for younger dogs whose Cushing's is being effectively controlled with medication, I think that many vets do believe that vaccination remains an important treatment consideration.

My own specialist took a middle-of-the-road position in terms of vaccinating Cushpups. He did not advise eliminating vaccinations completely, and did not feel as though it was problematic to vaccinate a dog that was being effectively treated for Cushing's (i.e., the dog appeared to be well and had been therapeutically stabilized on Lysodren or trilostane). However, he did recommend "matching" the specific vaccination program to the risk factors for each dog, so as to provide protection as it was needed without over-vaccinating.

That advice always seemed very reasonable to me, since I did want to minimize the risk that my boy would contract a disease that could otherwise have been prevented, while at the same time not exposing him to unnecessary side effects. We always took daily walks in areas that were frequented by many other dogs, wild animals and waterfowl, and I would have worried had I not had him immunized for certain communicable diseases. But I did not want to "over-do" it unnecessarily, either.

You and your vet will know best what Katie's individual "risk profile" looks like depending upon her typical daily activities, her exposure to other animals, and also the presence of disease outbreaks in your local area. Checking blood titer levels can be another helpful option for decision-making (checking the blood to see what degree of antibodies are already present so as to avoid unnecessary re-vaccination). However, it's my understanding that there is not yet total agreement among researchers re: canine blood titer interpretation (there are questions as to which titer "thresholds" truly convey immunity). So once again, I think the specifics of Katie's individual situation will help you and your vet decide which tests may be most useful, or whether continued vaccination is advisable.

In the meantime, continued good luck with the trilostane!!!!!!

Marianne

[Mrs. J]

Hi everyone,

Katie just completed, and we got the results of her first 10-14 ACTH stim test.

I havent talked to the vet herself yet, just the tech, but Katie's levels have NOT changed at all. The vet has apparently has spoken to other vets and done some research, and now she wants to increase Katie's dosage of Trilostane to twice a day, 30 mg each time. What does everyone think of this? Katie weighs 28lbs.

Heres the thing though: My husband and I have (at least we think so anyway) noticed a difference, albeit slight, in her water consumption and urination. I have personally told him over the past week or so that I didnt think it was as much as we want it to be yet, but we both agree there has been a decrease. Katie would actually wake me up because she wanted to drink - she doesnt do that anymore. So that in itself is an improvement. However, the tech told me today there has been NO improvement. They apparently were debating on whether to change her over to Lysodren or increase this med and she has opted to increase this med.

They want me to start tonight, Im really afraid. The only numbers I have so far are:

11.5 pre
15.3 post

I have no idea what these mean or if anyone else would. :( So confused, but desperately need help.

Thanks all.

[labblab]

Katie just completed, and we got the results of her first 10-14 ACTH stim test.

I havent talked to the vet herself yet, just the tech, but Katie's levels have NOT changed at all.

However, the tech told me today there has been NO improvement. They apparently were debating on whether to change her over to Lysodren or increase this med and she has opted to increase this med.

They want me to start tonight, Im really afraid. The only numbers I have so far are:

11.5 pre
15.3 post

Was an ACTH stim test performed before Katie started on the trilostane? Since the vet tech is saying that there has been no improvement, it seems that one must have been performed. But this is where things get really confusing, because if there has been no change and Katie's initial ACTH "post" result was no higher than 15.3 -- I'm feeling confused about her initial diagnosis with Cushing's in the first place. For most laboratories, a "post" result of 15.3 falls within the normal range for dogs without the disease.

In looking through your thread, it looks as though Katie did have a diagnostic LDDS test performed. But there is no mention of a diagnostic ACTH. If you could post the actual results of these diagnostic tests, it would be really helpful in order for us to give you meaningful feedback. Do you know whether your vet suspects that Katie may suffer from the adrenal form of Cushing's as opposed to the pituitary form? If so, that would be one reason why her diagnostic ACTH may have fallen within the normal range, and also why Lysodren might be preferred over trilostane (which we can talk about more later). But if not, I am baffled as to why your vet would be considering a switch after only two weeks of trilostane treatment.

Here's a link to the Treatment and Monitoring Chart published by the manufacturers of Vetoryl (brandname trilostane):

http://www.dechra-us.com/File/vetoryl_Treatment_and_Monitoring_Flowchart.pdf

Hopefully, this will give you some additional information regarding the significance of the ACTH results. Not all vets or experts follow these recommendations to the letter, but it does give you a general framework for the test results. And according to these recommendations, unless a dog's cortisol level has dropped too low, the trilostane dose would be left unchanged until the initial 30-day mark. This is because the assumption is that most dogs will see an ongoing decrease in cortisol over the first few weeks of treatment. If there truly has been no downward movement whatsoever in the cortisol level at the two-week mark, then I do believe some specialists might opt to increase the dosage at that time. But doubling the dose is a mighty big jump...:o

But once again, for us to be able to give you really meaningful feedback, we really need to know what Katie's diagnostic test results were...

Marianne

[Mrs. J]

Hi, thank you for your response. Unfortunately, the numbers you are asking for, I do not have right now, but I have emailed and asked for them. Not sure when I will get them.

However, Katie had two initial all day blood tests done initially. An LDDS and the ACTH stim test. She was diagnosed with pituitary cushings on March 30th - started Trilostane the next day, 30 mg once per day.

Apparently from what Ive been told so far, they claim she has showed NO change at all from the initial tests. Not a slow drop, but NO drop. That is why I personally suspect shes increasing the dosage, but I dont know. Katie has many clinical signs - she has the protruding belly, the terrible thirst and urination, increased appetitie, terrible terrible skin issues, thyroid issues, laying on a cold floor because she cant take a warm floor, etc. Has had them for a LONG time, in fact so long that the vet feels she has had undiagnosed Cushings for years.

She has already had her 30mg capsule today, am supposed to give another later. Im petrified seriously.


Edit: Are you saying Katies numbers - to you - indicate NO cushings? Then why am I treating her - OMG now Im really scared .

[labblab]

Apparently from what Ive been told so far, they claim she has showed NO change at all from the initial tests. Not a slow drop, but NO drop. That is why I personally suspect shes increasing the dosage, but I dont know. Katie has many clinical signs - she has the protruding belly, the terrible thirst and urination, increased appetitie, terrible terrible skin issues, thyroid issues, laying on a cold floor because she cant take a warm floor, etc. Has had them for a LONG time, in fact so long that the vet feels she has had undiagnosed Cushings for years.

She has already had her 30mg capsule today, am supposed to give another later. Im petrified seriously.
I am not a vet, so it is not my place to tell you to go against your vet's instructions. But if you are feeling really worried about giving the additional capsule, I think you have every reason to hold off until you have had the chance to talk with your vet personally about this tomorrow. Waiting for one day to increase the dosage should not cause Katie any harm -- as you say, she has undoubtedly gone a long time without any treatment at all.

I understand that you are worried about alienating your vet when she is your last, best option (believe me, I HATE any type of conflict, myself!! :o). But truly, what the vet tech has told you about the test results just does not make sense. If it were me, I would want to talk directly with the vet in order to get some clarification, and to find out what Katie's original ACTH results were before proceeding. You may have to wait until later in the day tomorrow to talk directly to the vet, but that's OK. There really shouldn't be any great rush about this, even though you are feeling a lot of pressure right now. And I really think that all you need to say is that you do not feel comfortable with increasing Katie's dosage until you've had the chance to talk directly with the vet about her test results.

Marianne

[Mrs. J]

I understand what you are saying.

Heres my question: Can you (or anyone) tell me what these numbers mean so when I do talk to the vet (hopefully later today), I am armed with correct information? As you are, I am going to make the assumption that these are the same as the original numbers until they tell me differently.

Yes, I am greatly concerned with *challenging* the vet, I dont want to anger her at this point or lead her to think I may feel she is misdiagnosing - I need her. However, I cant allow a misdiagnosis either. I am walking a very thin line. How can I ask her direct questions without her thinking I dont trust her. :( ugh.

[labblab]

Edit: Are you saying Katies numbers - to you - indicate NO cushings? Then why am I treating her - OMG now Im really scared .
It is possible for a dog to test "negative" on one or both of the common diagnostic blood tests (the ACTH and the LDDS), and still suffer from Cushing's. And given Katie's classic symptom profile, I'm not necessarily doubting that Katie does indeed have the disease. But for most testing laboratories, a diagnostic ACTH "post" result of 15 ug/dl falls within the high range of "normal." So perhaps the vet tech misspoke Katie's results this time around. Or perhaps Katie actually tested normally on the ACTH but abnormally on the LDDS. Either way, I don't think it's unreasonable for you to ask your vet to clarify the testing results prior to increasing her medication.

Marianne

[labblab]

I'll try to come back and post some specific links for you to refer to, but unfortunately I'll soon be heading out of the house for the evening. But hopefully we'll have some more "reinforcements" riding in to add their thoughts here before long, too...;)

Marianne

[Mrs. J]

Or perhaps Katie actually tested normally on the ACTH but abnormally on the LDDS. Either way, I don't think it's unreasonable for you to ask your vet to clarify the testing results prior to increasing her medication.

Hmmm...this is interesting that you say that because what originally happened was this: We scheduled her for her original test at the lab (for original diagnosis) and after the test the vet told us that they did an ACTH test when she wanted an LDDS test done first. So we scheduled again for the LDDS test, which then apparently confirmed what she suspected as Cushings. I didnt understand anything at that time (I am a little more knowledgeable now, but not much Im afraid), but at that time she said that the ACTH test (the first test) can back equivocal.

This is the quote from the actual email she sent me at the time:

"the cortisol test came back as equivocal. The resting cortisol is over twice the normal limit but the stimulation portion of the test showed that there was no stimulation. So this could mean that the pituitary gland has chronically over stimulated the adrenal gland and it cannot produce more. Unfortunately, this means that we need to run one more test. The low dose dexamethasone suppression test should finally settle the problem."

This was then performed and we started Katie on the 30mg the next day - now here we are.

Thank you for baring with me, Im a mess here. :(

[labblab]

OK, that does make more sense then. And it is true that Katie's "pre" or resting cortisol level was quite elevated this time around, too. So if that is the case -- and there truly has been no downward movement whatsoever -- then perhaps the dosage increase is in fact warranted. Sorry for making you even more nervous than you were beforehand!!

And for what it's worth, here's a link to one laboratory's guidelines for ACTH diagnostic testing. As you will see, a "post" result of 15 ug/dl falls within their high normal range.

http://www.idexx.com/pubwebresources/pdf/en_us/smallanimal/snap/cortisol/cortisol-acth-stimulation-protocol.pdf

Having given you this link, please do be aware that the goal of trilostane treatment is to lower the cortisol level BELOW the level that is normal for a dog without the disease (please take a look at that earlier Monitoring link that I gave you, and that will give you a better idea about treatment goals).

OK, gotta run for now. But I'm sure that others will also be around this evening to answer any additional questions.

Marianne

[Mrs. J]

Again, thank you SO much for your input and the time you gave me. No information is bad information to me right now. I am looking at the links you have sent me and doing my best to understand them.

My immediate need I guess is to understand what the heck I am talking about when I talk to the vet later tonight. I am trying to get a read on how these numbers work - anyone have an easy way to explain them to a noob, please let me know :)

Thank you!!

[Harley PoMMom]

What is it, exactly, that you do not understand, and lets see if we can make it clearer, ok. ;):)

Love and hugs,
Lori

[lulusmom]

I have just reread your thread and I have conflicting opinions about your vet’s experience with cushing’s. I was impressed that she understood how irresponsible she would be if she confirmed diagnosis based on the results of one acth stim test. But then it all goes downhill for from there. Big red flags for me were she recommended treatment of Anipryl for a dog with overt symptoms and she has ignored the manufacturers guidelines for both monitoring treatment and dosing adjustment. I’ve read a ton of papers and listened to a lot lectures given by reknown endocrinologists who frequently lecture veterinarians who are interested in continuing education and none of them have ever said that it was safe or acceptable to wait 30 days to do the first stim test after initiating treatment. The manufacturer of the drugs says 10 to 14 days and so do our American experts so I’m not sure which expert lectured your vet.

The manufacturer also has specific guidelines for dosing adjustments and your vet is not following those guidelines. Original studies done in the U.K. showed that 80% of dogs did quite well with once daily dosing. American clinicians that are familiar with the drug and have conducted their own studies are showing about the same effective rate. The other 20% of the dogs were put on twice daily dosing because they met two criteria; 1) they had a post acth cortisol of 1 – 7 ug/dl and 2) their clinical signs never resolved. Trilostane is short lived and its enzyme blocking ability can start to diminish any time after 8 to 12 hours, depending on the dog and these 20% of dogs will show an increase in symptoms in the evening. This is not Katie’s problem because you haven’t even established an appropriate dose for once daily dosing. Secondly, if you go to twice daily dosing, you should follow protocol as set forth by the manufacturer, that being; “To switch from once daily to twice daily dosing, increase the total daily dose by 1/3 to ½ and divide the total amount into two doses given 12 hours apart.” So in Katie’s case, you would increase the 30mg to 40mg or 45mg and divide by two. Given the mg’s available from Vetoryl, 20mg twice a day would be the logical twice daily dose. In my opinion, from a safety, cost and convenience standpoint, I’d much prefer that my vet follow protocol and work towards finding the dose that is going to be needed to get the post stimulation cortisol within a range of 1 – 7 ug/dl. If Katie’s symptoms are still not completely under control at that time, then I’d be talking about twice daily dosing.

Mrs. J., I realize that you feel uncomfortable with challenging your vet but cushing’s is one condition is that pet owners really need to make an effort to educate themselves. A lot of us have placed blind faith in our vets and our dogs have born the brundt of it. If your vet is not following protocol, don’t hesitate to challenge your vet in a diplomatic way and ask her to explain why she is not following the manufacturer’s treatment/monitoring protocol. You are Katie’s only voice so don’t be afraid to make it heard.

Sorry for the novel and believe it or not, I still have some other stuff to say but I need to scoot. Will check in later.

Glynda

P.S. It would help a whole lot if you can post the results of the tests that were done to diagnose Katie. It's hard to truly follow your vets rationale without it.

[Mrs. J]

Thank you - as I said no information is too much right now. I am learning, trying to educate.

I absolutely am working on getting the complete numbers, may take a few days, but I will have them.

OK, reading and re-reading what you are saying. First, I want to clarify a HUGE mistake, and it was completely my mistake and I need to make that clear. The Anipryl - This was NEVER prescribed by the vet. I guess I never clarified this in my original posts. I was left a quick message by the vet on my answering machine right after diagnosis which stated something to the effect that "we do have a positive diagnosis, we want to start Katie on XXX please call us as soon as you can so we can discuss it." (paraphrased) I then came here and posted on the board, etc. I then spoke to the vets office a little while later and they never said Anipryl, they had said Vetoryl, and were completely bewildered as to why I even though Anipryl. I then went back and re-listened to the message and they were 100% right - they did say Vetoryl. How in this world I even originally heard Anipryl was beyond me. My only explanation is that I was madly researching at the time and probably had the name in my head. I really am not as stupid as I sometimes come off. :)

Next, I need to clarify what you are saying here - Go to twice a day dosing of 20mg each time? Right now she is 30mg once a day - vet wants to go to twice a day - but 60 mg. I am just deathly afraid of the 60mg, it just sounds very harsh and high.

Interesting that you do mention that 12 hours in that the dogs sometimes show an increase in symptoms because alot of times later at night Katie has been showing more symptoms and I thought it was all in my head (meaning she seemed to want a lot more water/outs later at night).

The post before this one I was asked what I wanted to know - I just want to be able to explain to my vet my concerns and I want her to actually listen to me and not brush me off as Katie's mom who just doesnt get it.

Thanks all!!! :)

[AlisonandMia]

What is usually done when going to twice a day dosing is to drop the dose. Like you said, 20mg 2x day rather than just doubling the daily dose (30mg 2 x day). This is because although the first dose may not be working effectively after 12 hours there is still an amount of drug in the system to which the second dose will be added so the amount of trilostane in the system could at some point build up to to high a level.

Some vets might even want to try 15mg 2x day to start with, particularly the dog is going to be left unsupervised for significant periods of time.

Of course you may end up needing 30mg 2x day but best to play it safe and "start low and go slow", IMO.

Alison

[Mrs. J]

Yes, I absolutely see what you are saying, thank you. Katie will not be unsupervised right now, so thats not an issue.

Another question I have is why is it that she is showing some sense of getting better, a little less water consumption/urination, not waking me up to get water, and also first thing when she gets up she is not rushing to the water bowl instead of outside as she was just a couple weeks ago - if she has shown no improvement in the tests? Its boggling my mind.

Im guessing she must be a bit better in some way. Honestly, she seems like she may actually feel better, less stressed also. Are these things all in our head (my husband and I)?

I just want to scream at this point. I just want Katie to be better :(

[AlisonandMia]

I'm not completely clear on the ACTH stim results. It seems you had an ACTH stim done as a part of the diagnosis and that you have had one done at 10 days, is that correct?

You've posted one set of results that I could see with a post of around 15 - was that the diagnostic stim or the 10 day stim?

Alison

[Mrs. J]

Yes, thats correct - 2 stim tests done.

One at original diagnosis time and one at the 10-14 day mark which was a few days ago.

I only have the numbers for the one done this week, the 10-14 day mark which is : pre 11.5 post 15.3.

I am still working on getting the original numbers.

[AlisonandMia]

Ok, if that is the 10 day stim test number that would fit very nicely with what you are seeing. Her cortisol on the diagnostic test was probably higher - possibly much, much higher. At the 10 day test the numbers aren't where you will eventually want them but they are on their way and that is progress. Because the typically continues to drop during the first month of treatment her cortisol is probably a tad lower now - which is good and likely explains the good things you are seeing.

In your position I'd keep the dose as it is now and see how things are going, both with Katie herself and the numbers, at 30 days before making any dose changes such as going to 2X a day dosing - especially as you are already seeing an improvement in her overnight/first thing in the morning water consumption.

The 10 day stim is usually done to ensure that the cortisol has not gone too low early on - which would be a concern because the numbers are almost certain to drop further in the following two or three weeks of dosing. Very rarely is a dose increase of any kind done on the strength of the 10 day stim results - that would only be considered if the numbers were still really high (like over 20, probably) and no clinical improvement whatsoever could be seen.

It sounds like Katie is doing really well to me!:)

Alison

PS: How many days of trilostane has she had so far?

[Mrs. J]

Thank you! :)

I am still waiting for the vet to contact me - hope I can express myself to her.

So now the thinking is not increase to 40mg (20mg twice a day) ?

This is now day 16 of the Trilostane. There is no significant/magnificant improvement, but we do see the stuff we mentioned above. I guess it could be summed up by saying, there doesnt seem to be that *emergency* need for the water bowl as there was, although she still has a good thirst, just not incredibly desperate as it was. (which is a good thing)

Edited to add: The tech who called me today said that was *NO* change in her numbers and they were (at the time) considering changing her med altogether. Then I got the call back from the tech saying no, they wanted to increase from 30mg - 1X daily to 60mg - 2X daily. I dont know her original numbers soooo ?? BUT as I said, my husband and I do seem to believe we see some progress, albeit small, we do think we do. Obviously, we just want to do the right thing.

[AlisonandMia]

I would think there would be a lot to be said for just leaving things as they are for now (30mg 1X per day) and see what the next couple of weeks bring. It is quite likely that you will start to see more and more improvements as time goes by. How does the pot belly look and feel?

If you can use 1X a day dosing that would be probably be easiest - only having to give a pill 1x per day. As the others have said a huge proportion of dogs do do very well on 1x day dosing.

I'm so hoping that treating Cushing's helps with her skin infections - sounds awful!

Alison

Regarding the numbers on the two tests - I really think you actually need to see both tests for yourself. The tech may have meant that her numbers on the second test (10 day) were not yet within the target range (and they aren't yet) or was mixed up in some other way - there are so many opportunities for confusion with these situations when messages are being relayed over the phone by techs etc.

[mypuppy]

Hi Katie's mom (I don't think I read your name anywhere here on your thread),

First, I want to say how much I and everyone here completely understand your frustration, confusion, anxiety over this condition and it's treatment process--we have all been/still are there. Without adding more confusion to the mix, I will summarize briefly my experience with Cushings/treatment with trilostane/Vetoryl. My Princess (7 year old lab), was diagnosed with PDH in October '09. I was simply devastated, angry, sad, oh soooooo very sad thinking my pup was going to die. While dealing with all my emotions, I found this forum, and oh boy, the people behind this forum were a Godsend at that time. Because of these wonderful, loving, caring individuals (they know who they are!), I was able to successfully make more educated decisions for my Princess when it came to her health. I started Princess on 2 (60mg) pills of trilostane once a day in the morning. She was stimmed on the 14th day after beginning her meds. Thank God for that 14 day stim because had it be performed longer than that, she may have been heading for a crisis. At the 14 day stim we learned her cortisol levels dropped too low
(.1). At that point we stopped the medication altogether, and although my IMS instructed me to restart within one week, luckily everyone here highly recommended I DO NOT restart the meds unless Princess was still showing signs of her cushings, i.e., thirst, urination, seeking cool place to lay, panting, excessive appetite. I also confirmed that information when I directly called Dechra, makers of Vetoryl who also recommended me not to start unless the symptoms were also present. My IMS explained to me that Princess's last stim numbers indicated she was heading to being cushonoid, however, none of the symptoms were present, so I DID NOT restart those meds. Happily, Princess was in remission and symptom free for exactly 5 months without treatment. Unfortunately, Princess started showing symptoms again recently, and I am waiting to get her stim results to restart her trilo at a much lower dose, 1 (60mg) pill once a day, weighing in at 72lbs. I hope this sheds some light as to why you are seeing some subtle signs of Katie's symptoms getting better. I certainly hope you take a deep breath and try to digest all the info. given to you here--gosh, I know it's overwhelming at times, but take your time to sit down and research everything, and I promise it will all start making some sense, and things will begin to fall into place for you and your precious Katie. I know how scared you are right now. It's not a nice place to be, but with your close supervision, open communication with your vet/IMS, I know you will get your Katie and yourself to a happier place soon enough. Be patient, stay on board and ask all the questions you want. These people are willingly and lovingly here for you and each other with open arms, and I can assure you we all have your precious Katie's best interest at heart. I look forward to reading on Katie's progress in the coming days/weeks, and will keep her in my prayers for her returned good health. Chin up, ya here! Luv you both bunches, xo Jeanette and Princess

[Mrs. J]

Thank you thank you!! :) (my name is Karen)

I am very convinced that I should wait before any action is taken. I am going to get those numbers and let you all know what they are.

So for right now, I am going to leave her at 30mg 1X daily until her next stim test in 10 days - as long as nothing changes within that time of course. I hope the vet understands when I tell her, still am waiting to hear from her.

I will let you all know when/what the vet has to say when I hear from her.

Thank you all so so much!! :) You are all truly lifesavers to me !!

[Casey's Mom]

Karen just wanted to welcome you to the bunch!

You are getting some great advice here so just keep asking the questions. We are here to help and hold your hand through this journey we are all on together.

Love and hugs to you and Katie.

[Mrs. J]

Just realized that I didnt answer something else that was asked. Please forgive me - I am under alot of personal stress right now. My brother is in the hospital and not doing well and the issues with Katie are a quite a lot for me at the moment.

Anyway, it was asked about Katies belly area. It is so weird. My husband and I were just saying last night that we both have noticed a difference, a decrease, in her belly!!!

Also I want to report that just a little while ago, Katie had a very small drink from her bowl, walked away went and ate her supper, and then back to the bowl and drank a couple of licks and then just up and walked away from her bowl!!! You have no idea how significant this is!!! She hasnt drank this little - especially after eating - in SUCH a long time!!! There is just NO way I can possibly believe at this point that she isnt getting better. You have to understand that we are always making her take a breather at that bowl. Although she has been drinking less lately, this is the very first time we have seen her actually drink this little AND right after a meal to boot!! :) I hope this isnt just a coincidence, I hope and pray it is true progress!

[lulusmom]

Hi Karen,

I'm glad that Alison weighed in and gave you some very sound advice. I have a propensity for rambling in my posts so if I confused you, I apologize. I was trying to explain that because Katie's circumstances aren't the norm for twice daily dosing consideration, I think once daily dosing is the way to go. Alison brought up a good point about the possibility that if Katie's cortisol was really high before starting treatment, 15 ug/dl could be reflective of a significant drop especially since you've seen noticable improvements in Katie.

As for the vet tech telling you that the numbers have not changed at all, that would be questionable if Katie was correctly diagnosed because a post stimulation of 15 ug/dl would be considered normal. I'm glad that you will be getting copies of the diagnostic tests as that will definitely help us understand how your vet is assessing the 10 day stim for the purposes of dosing change.

I want to make it clear that we all know how frustrating this can be and you have never, ever sounded stupid. You're a great mom and I respect you greatly for caring enough to be here and for opting to take a cautious approach to guarantee that Katie doesn't have an adverse reaction. There are dogs with other conditions such as diabetes that warrants getting the cortisol down as soon as possible but since that's not the case with Katie, there is no reason why you can't take it slow and easy.

To say that cushing's is a frustrating and scarey disease would be an understatement. It's such a difficult disease to wrap your arms around and it's impossible to get a good grasp of things in a few days. I have two dogs with cushing's and had been dealing with my first one for a few years before I found these great people. I thought I knew a lot but boy was I wrong. I had no idea how many pieces of the puzzle I was missing. I can't tell you how much I've learned from these folks and it's made me an excellent advocate for my dogs......and big pain in their specialist's butt. :D I've also acquired a not so healthy insatiable appetite to learn everything I can about cushing's. Just ask my husband who'll tell you that being a football widow's got nothing on being a canine cushing's widower. :D Just remember that a lot of us have been dealing with this disease for a lot longer than you and it's just a matter of time before you'll be posting and helping newcomers.

Glynda

P.S. I think you truly are seeing signs of improvement. Dogs with cushing's just don't lose their pot belly or reduce their water intake unless the drug is doing its job.

[Mrs. J]

Alison brought up a good point about the possibility that if Katie's cortisol was really high before starting treatment, 15 ug/dl could be reflective of a significant drop especially since you've seen noticable improvements in Katie.

As for the vet tech telling you that the numbers have not changed at all, that would be questionable if Katie was correctly diagnosed because a post stimulation of 15 ug/dl would be considered normal. I'm glad that you will be getting copies of the diagnostic tests as that will definitely help us understand how your vet is assessing the 10 day stim for the purposes of dosing change.


Please forgive me - Im a bit confused :) I understand that if the cortisol was really high before that 15 would be a great improvement - but why would they tell me NO improvement is being shown? See, this is where I get lost and feel dumb.

Thank you so so much, you all are making me feel much better, and I am trying to calm down about this. I just want to do the right thing and understand this in the worst way. :)

[Mrs. J]

Ok, now what :(

My vet just emailed me - this is her response to me:

--------------------------------------

"According to the endocronologist I work with, she recommends twice daily dosing to begin with. I did the lower dosing because you are so jumpy. I do think it is safe. Previously, it was believed that the side effects were less serious with Vetoryl. Now, the incidence seems to be the same as Lysodren. I think that your dog is having trouble because the disease has been going on for so long.

There was a change, just that the cortisol should be flatline under 4.0. I do not have your previous lab reports memorized, so I do not remember the exact numbers. If you see a decrease in clinical signs, then that is a positive sign. I don't understand why this is confusing.

Recheck stim in two weeks. If I still don't see a resting cortisol below 6.0, then I will switch to Lysodren. I have lots of experience with this medication. (My mother-in-law's dog was on it for 8 years!) There is no hard and fast rule to how dogs will react to either medication."

---------------------------------------

I hope this is ok to post - Im very unhappy about this - now Im completely lost. I do not agree with her and I guess she thinks Im jumpy and getting confused for no reason. :(

[AlisonandMia]

There are two schools of thought on dosing of trilostane - the main one says that once-a-day dosing is usually ok and certainly the place to start. This is what Dechra, the manufacturers of Vetoryl, say and have been saying ever since Vetoryl was launched.

There has also been some research at UC Davis where twice daily dosing is done from the outset. The rationale for this is that trilostane is metabolized rapidly, with the peak of the cortisol-lowering effect being around 4 - 6 hours after a dose is given. In theory the serum levels of the drug are so low that after 10 - 12 hours it is quite likely that the high cortisol production should start up again. For that reason they feel that twice-daily dosing is the ideal.

When I first heard that, it made sense to me - it did seem to be more logical. But really what I've seen here makes me think that old recommendation of once-a-day dosing can and does work well for many dogs and is certainly the best (and safest) place to start. Starting with that simple once-a-day dose seems to be the best way to get a feel for how an individual dog responds to and handles the drug during that first month of treatment.

We have seen some dogs who definitely get a rebound of symptoms in the evening - panting, restlessness,frequent urination and drinking through the night are common. These are the ones that seem to benefit from twice-daily dosing.

It sounds like the specialist that your vet is consulting is probably favors the UC Davis protocol. The fact that they are wanting the numbers to be under 5 also supports that. UC Davis seems to aim for the same numbers for trilsotane dogs as are required for Lysodren -treated dogs. With Lysodren you want the post number (the second number) to be between 1 & 5 whereas other authorities say that a post of up to 9 (as long as clinical signs are resolved) is ok for a dog treated with trilostane. We've seen here that many trilostane dogs do seem to do better with a post number somewhere between 5 and 9 and sometimes don't seem to be that well when their numbers go down below 3. It is believed (I can find the reference for you if you like) that this difference is caused by the different ways in which the two medications work on the adrenal glands.

There is nothing wrong with the twice-a-day dosing protocol (as long as the UC-Davis recommendation to start at a very low mg/kg dose is followed) but considering that you have started with a once-a-day dose and are seeing some very definite improvements (I'm sure it is not your imagination!) then continuing with that makes sense.

It sounds to me like your vet has not had a lot of experience with trilostane and started out as per Dechra's recommendations but has subsequently consulted with a UC-Davis trained specialist and thus the change of protocol at this point - which understandably you are finding confusing!

Alison

PS: If the cortisol was below 4 at the 10 day stim that would actually be a little bit of a concern because of the likelihood of the cortisol levels dropping further over the next 2 or 3 weeks. Some vets would probably decrease the dose a little if they saw a 10 stim of 4 - or at least advocate the very careful monitoring of the dog in case the cortisol dropped too far in the near future.

[BestBuddy]

I hope by the word flatline she did not mean same pre and post because that would be non stimulatory and can be a problem.

As for wanting the first ACTH to show under 4 I think that is really ridiculous. Katie would have had a post number well over 17 I would guess at diagnosis so making this progress in 10 days is good. Cortisol numbers can continue to drop even at the same dose for several months so I think the real test will be the next ACTH to see if things are still continuing down.

I know it must be really hard for you with what we are telling you and having to deal with your vets/specialists as well. In my opinion you are seeing progress and continuing on the same dose of trilo is not going to set you back if you do have to increase after the next ACTH.

Jenny

[Mrs. J]

Thank you once again.

I believe I understand what you are saying. So if the second number after the 10 day stim should be between 5 - 9, then I can see where Katies number post of 15.3 is high. But maybe I misunderstood (as I tend to do at times :) but did someone say in an earlier post that 15 is high normal? So 5 - 9 would be extremely low, no? Or is it the pre number we are referring to and not the post number? If so, I see where Katie's 11.5 is high for sure. (am I understanding that correctly?)

I also have absolutely no problem with twice a day dosing at all, but what I do have a problem with is that Katie is right now on 30 mg 1X a day - the vet wants me to immediately start her on 30 mg 2X a day - totaling 60 mg a day. This is my issue. If she had said 40 total a day (20mg 2X daily) for instance, I would not even question it for the most part. But to double it? Really? I am petrified to do that, and like everyone is telling me, at only the 10 day mark?

Ok lastly, as I have previously said, we do notice some, albeit small, positive signs, as in a slightly smaller belly, a small decrease in water consumption/urination - however, since I do tend to be a late night person, I do notice, as I just did, that right around now, shortly before this posting, Katie does seem to increase in water consumption a bit, therefore increasing her urination (this would be an hour or so after the 12 hour mark). I have been actually telling my husband this for a few days that I was wondering if it was wearing off around now, before we even got the test done.

However, heres the other catch (and its a bit confusing so bare with me), she used to wake me up periodicly wanting water/outs etc after going to bed, but now does not do that AND when we do get up for the day, she is not in a rush to that water bowl as she previously was. But the confusing thing is - when we get up for the day, this is when the capsule should probably be just about, if not completely, worn off as she is due for another one; the 24 hour mark. So to summarize, late at night, she is a bit more symptomatic (that would maybe trigger needing twice a day dosage), but when the capsule should be gone, and shes ready for her new dose, she doesnt seem to be as symptomatic. Does this make any sense? Its SO confusing as you know. Im thinking twice a day dosaging is actually maybe a good option, but NOT doubling the dose when doing so, at least not at this point.

So my questions are, how do I handle the vet? Do I just accept what she is saying and not question her and go with doubling Katies dose or do I question her and make her even more annoyed with me, since you can all see she is by that email.

[AlisonandMia]

So my questions are, how do I handle the vet? Do I just accept what she is saying and not question her and go with doubling Katies dose or do I question her and make her even more annoyed with me, since you can all see she is by that email.

Maybe you could try saying that you are under a lot of stress at the moment with your brother being ill etc. and that you'd rather keep things as they are for the time being as you and your husband are seeing some improvements in Katie that you are very pleased with. You could say that because of all the stuff that is going on in your life you really don't feel up to making any changes at the moment so could you just maintain the status quo until the next stim test.

The others may have more and better suggestions for you tomorrow.

Good luck and try to get a good night's sleep.:)

Alison

[Mrs. J]

Thank you Jenny and Alison! :)

Alison, your idea on how to handle my vet isnt that far off actually. I mean obviously I do not agree with doubling Katie's meds at this point AT ALL, even under normal family circumstances, but doing it with the stress of my brother right now and what I am going through with my family is not what I want at this point at all.

You have a good night too and please sleep well! :)

[mypuppy]

Hi again Karen,
I know how you feel about not wanting to rock the boat with your vet, however as others have told you here, you know your baby better than anyone, even the dr., and when in doubt, I feel you must always go with your gutt feeling. Don't be afraid to voice your opinions or make your own decisions when it comes to your Katie. I learned the hard way with my Princess, and I won't allow anyone to convince me otherwise. I went totally against my IMS's instructions to restart the trilo just one week after learning she was extremely low. Gosh, I only wish at that time I knew Dechra was in the process of modifying their dosing guidelines, and started Princess at the lower end and work my way up. BTW, you are not going crazy or seeing things when you say Katie barely has been touching her water bowl. I had the same feeling with Princess as quick as two days after she began treatment. It was amazing to me too how quickly the meds kicked in, and then all the other symptoms began to disappear as well. It was night and day, and I can't simply explain how wonderful it was to get my old dog back. She was happy, energetic, fetching balls and sticks in the yard, fetching her toys, jumping on our beds again (yeah, spoiled rotten) Poor thing probably got exhausted from all the bed jumping my girls were making her do--lol. We were in total awe! I would love more than anything for you to be there with your Katie soon. I'm sorry for all the family issues you are having, to boot, but try not to let this get the best of you, take it slow and please, please, DO NOT beat yourself up over it, don't be so hard on yourself. IMO, as the others, I would give it a little more time with the meds and keep things the way they are, and you just may see even greater improvement. Hang in there...tight hugs to you and belly rubs to Katie. xo Jeanette

[labblab]

I'm finally back again, Karen, and so glad to see you've gotten such helpful feedback since last evening. Here's some additional thoughts and clarifications since I posted earlier...

First, I totally agree with Alison's suggestion as to how you might approach your vet re: remaining at the status quo until the next ACTH test. This would buy you some time to see whether Katie's cortisol drops further, and also to gather Katie's actual diagnostic test results. Because there still seems to be confusion about those results.

Just to recap, yesterday the vet tech told yout that there was NO CHANGE WHATSOEVER between Katie's diagnostic ACTH result and her first monitoring test after two weeks of trilostane treatment. I initially questioned what she told you (how could her diagnostic ACTH "post" result have been only 15 ug/dl?). However, you then printed your vet's email at the time of diagnosis, stating that Katie's diagnostic ACTH was indeed borderline, and giving possible reasons why. However, your vet's email yesterday stated that there HAS been a lowering of the cortisol -- but just not as great as she would like. So these statements of the vet tech and your vet contradict one other. I think it remains important for you to get those actual diagnostic test numbers (both the ACTH and LDDS) so as to be able to accurately judge Katie's treatment progress from this point onward.

Secondly, to clarify, the ACTH is used both as a diagnostic test for Cushing's and also as a monitoring test once treatment is underway.


I believe I understand what you are saying. So if the second number after the 10 day stim should be between 5 - 9, then I can see where Katies number post of 15.3 is high. But maybe I misunderstood (as I tend to do at times :) but did someone say in an earlier post that 15 is high normal? So 5 - 9 would be extremely low, no? Or is it the pre number we are referring to and not the post number? If so, I see where Katie's 11.5 is high for sure. (am I understanding that correctly?)

Per the two links I gave you yesterday, the numbers you are aiming for are different, depending upon how the test is being used. When used diagnostically, a "post" result of 15 ug/dl falls within the high normal range for a dog who does not have Cushing's. But once Cushing's has been diagnosed and trilostane treatment has begun, you are aiming for an ACTH result that falls much lower -- approx 1.45 ug/dl to 9 ug/dl (at the highest). And as Alison has pointed out, some specialists (particularly those trained at UC Davis) prefer the treatment range to be lower and narrower.

The truth is, there remains a fair amount of variability as to the manner in which different specialists wish to proceed with dosing.
And even after all the cautions we've given you so far, it may turn out to be the case that Katie WILL eventually end up doing better being treated with 30 mg. twice daily. A total of 60 mg. daily would equal a formula of about 2 mg. per pound, which is where some specialists do prefer to begin (as well as giving the med twice daily). And if Katie truly has not shown any cortisol lowering WHATSOEVER while taking 30 mg. daily, then it may take a significantly higher dose to see the desired results. But there is nothing wrong with taking things slowly to begin with -- both to give Katie the chance to adjust to the medication more gradually, and also to give yourself the time to learn more about the testing and monitoring goals. And especially to be able to get those actual test results!

Marianne

[Rebelsmom]

Hi Karen, I am new here also and just had a recently diagnosed pup with cushings. I know how frustrating it is to deal with a vet that doesn't want to listen to your concerns. I ended up changing my vet because the first wouldn't even consider cushings.

Rebel weighs 35lbs and still with a couple to lose and is on 60mg of veteroyl once a day. I think I remember you saying that Katie was around 28lbs?? I'm by far no expert but I have seen some really good changes in Rebel on that dose.

Praying for you and Katie and I hope that you get the answers you need. The people on this board have been wonderful so far.

Melissa

[Dollydog]

Hi Karen,
Have been reading your thread last night and this morning and have a few comments. Alison has a great idea on how to handle your vet!
In my opinion you don't have to DOUBLE the dose right now, especially as you're seeing some positive changes. I don't understand why your vet would even consider changing to Lysodren so early in Katie's treatment, maybe it has something to do with her having had Cushings for a long time. But it doesn't sound like you need that hassle with everything else that is going on.

We used trilo for the last 32 months of Lady's life and it worked well for her. We started on once daily dosing and then switched to twice daily....she was diabetic also and it seemed to help with regulating her glucose levels.
After being part of this forum for the last 3+ years the steady approach seems to work the best. I can understand your vet wanting to address this quickly and aggressively if she feels Katie has had Cushings for a long time but doubling the dose so soon doesn't seem the right thing to do. I can't remember how much experience she has with trilo but having experience with Lysodren doesn't mean she's experienced with both. I know you don't need the stress of finding another vet right now so hope she understands why she needs to be a little more patient.
It's great that you're seeing some positive changes and hope that you'll see more in the next few weeks. I'll keep checking for your updates.
Jo-Ann & my Dollydog angel :)

[Mrs. J]

Thank you everyone! :)

I think I am actually starting to get this now, thanks to all of you.

Yes I intend to stay at status quo until the next test, which is in a couple weeks. Of course if Katie seems to go downhill at any point before then I will definitely take some action though.

I will be talking to the vet soon and I know she wont be happy with me, but hey, Im not very happy with her either right now, so we are even.

I will keep you all updated as to what is going on, and the minute I get those results you all will be the first to know - believe me!!! :)

Thank you all again, you have given me comfort in all of this and for that I am very grateful.

Karen

[Mrs. J]

Hi everyone, update:

Wow. What a difference 24 hours can make. For the worse unfortunately.

Update as of status with vet: I emailed her, as that seems to be the only way we communicate these days. I let her know of my brothers situation and that coupled with Katie's situation, my stress level is extremely elevated right now.

I then basicly told her that when Katie was diagnosed, I started reading and finding out the first thing that was recommended was an educated mom. So I am seeking to become educated and hoping to become an expert ( :) ) I told her from what Ive read and researched, it appeared the specialist she was consulting was following the UC Davis model and that I actually agreed with that and that I felt that Katie is a good candidate to twice daily dosing. I explained to her how I felt Katie seemed a bit worse at the 12 hour mark but told her that was a bit confusing since when she woke up for the day, she wasnt necessarily wanting the water first thing.

But then I did tell her that I really dont feel comfortable at this time, doubling the dose and that from what I have been finding, it seems that most feel that taking it slow and increasing dosage slowly is the best thing. I told her that I basicly wanted the 10 day stim test to ensure her levels had not dropped too low and that we know that obviously didnt happen. I then told her how I wouldnt mind increasing the dose (if need be of course) in small levels, for instance I used the example of instead of her 30mg 1X daily that she is on now, that I would gladly do 20mg 2x daily.

I then told her I would really like to follow Katies progress (or any lack thereof) and if I could get a list of her numbers at diagnosis and followups.

I tried to be as friendly and diplomatic as possible - but firm. Well, I have NOT heard back from her as of yet, and who knows if I will. Im thinking based on her attitude to me last time, she is not liking me too much right now. So here is my dilemna.

Update on Katie as of right now: Katie has pretty much reverted tonight. :( She has kept me up all night wanting water/outs, water/outs. I am exhausted and stressed to the max right now. Obviously she probably does need an increase of some kind. So my question is - what do I do from here? Do I double the dosage that my vet wanted me to or do I plead with her to allow a smaller increase? And another question I have is if I end up doing a smaller increase, as this is what I truly want (unless everyone thinks I am wrong, PLEASE tell me), how do I get smaller dosage of the pills I have? I cannot break the capsules obviously and Im not sure they sell anything that amounts to a smaller dosage like 20mg 2x daily?

Help :( Lost and feel abandoned by my vet.

[labblab]

Hi Karen,

I am so sorry that you are having such a bad time!!! But I will keep my fingers crossed and hope that perhaps the delay in your vet's response is due to her gathering together Katie's records in order to give you the test results you have requested :o. What you wrote to her sounds totally reasonable (and commendable -- every vet should hope for such an educated client!).

In answer to your question about smaller dosing units, yes, Vetoryl does come in 10 mg. capsules. So assuming your vet does respond to you quickly, you should be able to get a prescription for the smaller units. And that would be ideal to allow for the smaller dosing increase.

But if you don't hear back over the weekend and Katie remains highly symptomatic -- I'm going to go out on a limb here and say that, if it were me, I'd probably go ahead and try giving her the additional 30 mg. at suppertime. Others here may disagree, and that is the beauty of a message board like this -- to get a lot of different opinions. But you are watching her like a hawk, and you can easily discontinue the dosing if she starts to seem overmedicated in any way. But at this point, it sounds as though she is going backward rather than forward. And although there are discrepancies in what the vet tech and the vet told you as to whether or not her cortisol level has come down at all -- it doesn't sound as though it has come down significantly during these first couple of weeks. So I'm thinking that if push comes to shove, it wouldn't hurt to see how she responds to at least a day or two at the higher dosage. As I said earlier, that dosage amount equals a formula of 2 mg. per lb., which is where some specialists would even start out and may not be excessively high given her apparent lack of response to the 30 mg.

But you've still got the whole day to hear back from your vet and to gather other opinions. So I'll also keep checking in on you, too. Again, I'm so sorry you're having such a rough time when, in fact, you are doing everything RIGHT for Katie!

Many hugs,
Marianne

[Spiceysmum]

Hi Karen,

I really feel for you right now. I know how hard it is to tell the vet you want some input into your dog's treatment. I've just had a vet (not my usual one) tell me that Trilostane doesn't cause diarrhoea when I know that it's one of the reactions to look out for. I suppose I can see it from their point of view, they are the 'so called' expert and someone is trying to tell them how to do there job. But they are not experts in every condition as I well know, as my other dog Brin would have lost the sight in one eye if I had taken notice of my vet at the time. We changed vets after that!

Hope you hear from her soon and you get the advice you need for Katie. Is there another vet in the practice you can see?

Linda and Spicey

[Mrs. J]

Thank you for your responses.

I have still not heard from the vet. Shes obviously a little put out by me. I guess she doesnt like moms getting involved :rolleyes:

Katie received her 30mg capsule today as usual. Her water drinking does appear to be increased right now, not majorly, if it is its very small, I may even be wrong, (yesterday it didnt start till the 12 hour mark) but I expect at this point it will greatly increase again at the 12 hour mark.

I just want to cry right now. I want the vet to work with me so badly, apparently she doesnt want to do that. I am supposed to just do what Im told and shut up. :(

There are other vets, but each require quite a bit of travel. This vet is actually a new vet that I am using. I left my old vet mainly because it was an hour travel time and he was not really comfortable with cushings. This current vet is 20-30 min away, which is one of the closest actually and she is 24/7 availability, which is awesome and she also accepts payment plans which we really need with all this. No other vet in this area that I know of does that. So Im kinda stuck.

Edit: Sorry I just re-read your question, is there another vet in the practice I can see - my vet is the owner, the way it works is that I have all appointments with her (except for follow-up visits for stim test) and regardless if I actually see her or not, she is the one who communicates with me directly all the time via email.

[labblab]

Karen, is it possible that your vet isn't personally answering anything other than emergency messages on a Saturday? Have you corresponded with her before about non-emergency stuff on the weekend?

I know there's lots of reasons to assume the worst, but I'm trying not to do that until we know for certain that she's snubbing you...

Marianne

[Mrs. J]

Yes, the first time we ever corresponded - this was a few weeks ago actually - it was just about test scheduling, far from emergency, and she talked to me numerous times on a Friday night, and a few times on that Saturday - as late as 1 AM I received a response from her. Then another time I just had a question and emailed on a Sunday and heard back from her within a few hours.

This time I emailed her yesterday and here we are - nothing.

The way I left that email was what I wrote and posted about prior and then I said I would really like to hear her thoughts on that based on what I said and how she would like to proceed.

Now, since last nights incidence, I have not contacted her again, so she doesnt actually know about the revert last night - but I am not quickly telling her this because she may insist even more about the double dosing now. I want(ed) to hear her thoughts on what I said first and then I was going to tell her the latest. Ugh :( what a mess.

[labblab]

Well, darn...:(

Still, until you actually see how she responds, there's hope that she will engage in a dialog of sorts with you. It does sound as though she is more familiar with Lysodren treatment than trilostane treatment. So perhaps you've raised some questions that are prompting her to do some further research herself. (I know, call me Pollyanna, but I'm still hoping...)

Marianne

[Mrs. J]

No, its ok I need hope!!! :)

You could be onto something with the other med, although I dont know if that is a good thing or not, is it? I was terrified to even start this med, now to switch to maybe switching to that one, I dont know if my stress level can take it. That one is real dangerous isnt it?

I dont know, the other issue with changing meds is that we havent even given Katie a good chance on this one yet really. Its been like 18 days tops. I would be much more comfortable trying diff dosages of this first before jumping the gun.

[Mrs. J]

Well, no word from the vet. I am SO angry and upset right now.

Katie is just short of the 12 hour mark and she is definitely symptomatic again tonight. Here we go again. Shes definitely NOT making any progress anymore.

What I wouldnt give to hear from her right now. I am very open to a dialogue with her, why cant she just discuss this as a professional. :( Has no mom ever wanted to get involved in the treatment before me? That place is crowded everytime I am there, surely someone else has wanted to get involved before me.

[Mrs. J]

My husband and I just had a discussion and we are thinking I should go and give her the extra 30mg...so that would be 30mg 2X daily - up from 30mg 1X daily.

Anyone have any opinions on this? She would be due for this within the hour. Im deathly afraid. If she would have a reaction, what might that be at this point? And would it happen immediately or in a few days?

[Harley PoMMom]

No, its ok I need hope!!! :)

You could be onto something with the other med, although I dont know if that is a good thing or not, is it? I was terrified to even start this med, now to switch to maybe switching to that one, I dont know if my stress level can take it. That one is real dangerous isnt it?


IMO ;):eek: Both Trilostane and Lysodren are life-saving drugs for our cush-pups. One is no more dangerous than the other as long as proper protocol procedure is followed. Lysodren does, however, stay in a pups system longer than Trilostane. One has to educate themself when they decide which drug of choice they are going to use.

The protocols are little different for both drugs. :)

Love and hugs,
Lori

[Harley PoMMom]

30mg 2X daily IMO...I would not do this

[Mrs. J]

Thank you for responding. May I ask what you would do in my shoes right now? Im lost...

[Harley PoMMom]

Her reaction to this would probably be within a hour or two.

This is from Dechra's Product Insert:


PRECAUTIONS:
Hypoadrenocorticism can develop at any dose of VETORYL Capsules. In some cases, it may take months for adrenal function to return and some dogs never regain adequate adrenal function.
A small percentage of dogs may develop corticosteroid withdrawal syndrome within 10 days of starting treatment. This phenomenon results from acute withdrawal of circulating glucocorticoids; clinical signs include weakness, lethargy, anorexia, and weight loss.1

ADVERSE REACTIONS:
The most common adverse reactions reported are poor/reduced appetite, vomiting, lethargy/dullness, diarrhea, and weakness. Occasionally, more serious reactions, including severe depression, hemorrhagic diarrhea, collapse, hypoadrenocortical crisis or adrenal necrosis/rupture may occur, and may result in death.

http://www.dechra-us.com/File/prod_vetyrol.pdf

Love and hugs,
Lori

[Mrs. J]

Yes, I have read that, thats what scares me.

I dont know what to do at this point. Katie is definitely not getting better - she is reverting slowly, its obvious - her numbers have not improved...the doctor recommends the increase from 30mg 1X daily to 30mg 2X daily and is mad at me for challenging her.

:(

Thank you

[Harley PoMMom]

We have also seen pups post numbers go lower on Trilostane in time with them on the same dosage. If I were in your shoes I would keep her on this same dosage until her next stim and then see what her numbers are...I think Glynda's suggestions of 20mg 2X is a really good idea if Katie's numbers are still high.

If her symptoms are still persistent, you can always have her restimed sooner...then ask about putting her on the 20mg 2X a day...tell the vet this makes you more comfortable doing it this way.

The way I see it...once you give them that pill, you can't take it back...so to me...better safe than sorry. This is JMO, of course! ;):)

Love and hugs,
Lori

[Harley PoMMom]

Your vet should not be getting mad at you. Holy crap if Harley's vet got mad at me for every time I challenged her...well she'd be mad at me all the time! :eek::D

She has to be open to you...willing to listen to your fears and concerns and what YOU have to say because for number one...Katie is your baby and number two...You are paying Her to do her job and part of her job IS listening to YOU.

Love and hugs,
Lori

[Mrs. J]

I understand what you are saying and agree with you.

The problem is I just had re-stimed earlier this week, vet said her numbers didnt drop at all, she is concerned and wants to double dosage (2x daily of course). I told her via email (as this is the way we communicate) that I was not comfortable at this point going that high on the dosage and even suggested the 20mg 2X daily and she is not responding to me, based on her last email to me (which I posted a piece of a couple pages back) she is upset with me since I am too jumpy and probably because I am not agreeing with her. She said that she consulted a specialist here and that she originally wanted to start on this dosage but didnt because of me.

Bottom line is she apparently doesnt like the fact that I am challenging her.

[Mrs. J]

Your vet should not be getting mad at you. Holy crap if Harley's vet got mad at me for every time I challenged her...well she'd be mad at me all the time! :eek::D

She has to be open to you...willing to listen to your fears and concerns and what YOU have to say because for number one...Katie is your baby and number two...You are paying Her to do her job and part of her job IS listening to YOU.

Love and hugs,
Lori


I know - hence my turmoil here. :( I have to do something at this point. Changing vets right now is really not an option unfortunately.

[Harley PoMMom]

Forgive my feeble mind...How much does Katie weigh?

[Mrs. J]

Katie weighs 28 lbs.

[Harley PoMMom]

Ok, I don't know if anyone has posted this or not...Dr Allen works for Dechra. Something else you could do is contact Dr Allen and talk to him directly and then ask your vet to do the same.


Hmmmm....Terri, I am thinking that there is some misunderstanding about this. As it turns out, I too have had occasion to talk to Dr. Allen recently. I had some general questions that I wanted to ask him, and initial dosing was one of them. He told me that he is personally recommending that people start at the lowest end of the Dechra range, which is 1 mg. per pound (and not 1 mg. per kg.). I don't think I misheard him, because we went on to discuss the differences in Dechra's recommendation from UC Davis.

He stressed that they are in no way challenging any vet's decision to follow Davis' guidelines if that is their preference. But the dosing protocols are not identical. I really wish that there would be written revision to Dechra's chart, in order to clarify this revised recommendation. But barring that, I will encourage people to contact Dechra directly in order to get the information first-hand in the event that they want more info. Here's contact info for Dechra's U.S. office: "Contact Us" (http://www.dechra-us.com/page/contact-us)

Marianne

[Mrs. J]

Thank you.

Honestly, at this point, I would not even think to mention to my vet to call this man. She seems to hate the fact that I am not just doing what she is saying without question. Im thinking there is some ego involved here unfortunately. I do understand that she may not like being questioned, but she needs to understand that I need to work with her. Right now it seems we are working against each other, which is doing Katie no good.

Having said that, we did start Katie off at basicly 1mg per pound. Katie is 28lb - we started her off at 30mg 1X daily. Got her tested this past week, from what Im told, only a very slight, if at all, decrease in her numbers. (another thing I have asked for is her numbers which so far no response)

The numbers I do have are this past weeks stim test which are:

pre 11.5
post 15.3

She is concerned that she is not decreasing, and I did tell her that some of Katie's clinical signs had improved so I wasnt comfortable with just doubling the dosage like that.

However, since that email, the past couple nights, I have seen a backward slide whereas her water drinking has definitely increased again. She seems a bit restless again, waking up wanting water more than anything, an out, snack etc.

[Harley PoMMom]

We have another member here, Linda and her 9 y/o Yorkie Toby, who just started Trilostane. Now her Toby weighs only 9.6 lbs and she decided to go with UC Davis protocol also, so Toby is getting 5mg of Trilostane once a day.

(link to Linda and Toby's thread)

http://www.k9cushings.com/forum/showthread.php?t=1854

Linda just posted Toby's 10 day stim results...his original diagnostic results were (post) 47.3 and after being on the Trilostane for 10 days his post is 15.8...quite a drop. Now, all of his symptoms are not resolved either but they are keeping him on this dose because of the drop in number and one usually doesn't make changes in dosage until the 30 day stim.

All pups are different and all pups will react different to the meds. That is why we like to see them numbers!

Hang in there, as I know this is so difficult. When Harley was first dx'd by his former vet and I wanted more tests done, his vet felt that I was second guessing him and told me to find another one. :eek: I did and Harley's new vet is the best.

Love and hugs,
Lori

[Mrs. J]

Thank you! :)

Ive been reading alot of the threads here, you people are so awesome and the information and education I am getting is great!!!

Well see the numbers are the thing in this situation - the vet claims there was really no drop, that is why she wanted to increase. She said she originally wanted to start Katie on this higher dosage but didnt because of me. I did post the test numbers from last week, I am still trying to get the original numbers, as you can see, not an easy task. She has even told me she will change the med at the next stim test if she doesnt see something positive. I dont even know how I will handle that yet. I will wait and see the numbers, post here for everyone and definitely NOT allow a med change no matter what if I dont agree to it. NO way.

Honestly, I would actually prefer another vet, this is a new vet, our old one was an hour away and really didnt feel comfortable with Cushings. However, I need this vet since she is one of the, if not THE closest vet in the area, she is open 24/7, and she accepts payment plans - all of these things I need at this point, as you can probably imagine. So hopefully, she wont show me and Katie the door just yet. (Believe me I am SO tempted...wish it was an option!)

Well, bad choice or not, my husband and I have been sitting here agonizing, simply agonizing, at this decision, but we decided to go for the extra 30mg. So Katie has now had 60mg today - 30 earlier and the other 30 just a little while ago.

We took into account all that you and everyone said, weighed it against what we are seeing with Katie and the final reason is we only have enough pills at this point for 6 more days - her next stim test is due approximately April 27 - so given that, we decided that we would give it a few days at the double dose and see what happens.

I am scared to death of this decision, I will watch Katie like a hawk, you can be sure of that. I HATED with every fiber of my being having to make this decision, I so wish my vet would work with me and not feel I am against her.

I now wonder how I will tell her that I opted to go with her dosage after all that I said to her about it. I fear she will NEVER listen to me now, as she probably feels I will just back down anyway. Funny thing is, if she really knew me, I am the type to not even think twice about challenging her, as I have many times in the past with my old vet, but given the reasons above (as to why I need this particular vet) I have clamed up and shut my mouth.

Thank you so much for being an ear for me tonight, I really needed it. :) Im sorry to be such a pain to everyone! If anyone believes in prayer, please pray for Katie - Im really scared of this decision.

[Spiceysmum]

Hi Karen,

Given the circumstances I don't think anyone would blame you for giving the other dose tonight. If her results are still high and the symptoms worsening I would probably have done the same thing. I wish you could get some help and understanding from your vet but everyone here will be here to listen and help all they can, you could never be a pain!

Linda and Spicey

[Harley PoMMom]

You do have prednisone on hand...right?

[Mrs. J]

Thank you Linda, Lori and Spicey!!! (feel better soon Spicey!!!) :)

No prednisone - tried to get that, she said they dont give it out with this med, just the other one!:eek: I know, it makes me even more scared.

But - I can have Katie to the vet in 20 min if necessary. Thats the up side here. They are 24/7. My husband and I are taking shifts tonight - I am up with her now, he will be up with her in a few hours. Thats another factor that went into our decision to start this now since he would be home all day.

[Harley PoMMom]

Well, your vet is wrong...please keep a close eye on Katie. If she shows any of the symptoms that I posted get her to a ER clinic immediately, especially since your vet did not give you the prednisone to give her incase of an emergency situation.

We will be here wishing you and Katie well...Linda told me that I have to go to bed! So I'd better listen to her!

Love and hugs,
Lori

[Spiceysmum]

Hi Karen,

Glad you are able to keep an eye on Katie through the night and all day tomorrow.

I am logging off now before my husband gets up as he thinks I am obsessed! Hoping for good news when I return later!

Linda and Spicey

[Mrs. J]

Thank you!! I absolutely will watch for anything abnormal!!

Goodnight!!

[labblab]

Good morning, Karen.

I just wanted to pop in to tell you that I agree with your decision to go ahead and give Katie the second capsule last night. As I had told you yesterday, that is what I would do in your shoes, given the feedback that you have received about the results of Katie's last stim and her worsening symptoms. If you DO see ill effects in Katie today, they should be reversible by stopping the medication. But I am really hoping that you will see some improvement!

I will be back later to post some more thoughts, but I did want to check in with you first thing this morning.

Marianne

[labblab]

OK, I'm back sooner than I expected (the girls have been fed and are out patrolling their yard...:p). And here's a few more thoughts. I am truly hoping that you all had an easy night, and that Katie will seem better today on the increased dosage. At a total of 60 mg. daily, she is squarely in the middle of Dechra's recommended beginning range of 1-3 mg./lb. As we've said, our experience (and Dechra's own recommendation) is that it is best to begin at the lowest end. Which is what you did. But Katie really didn't seem to be responding sufficiently well to just leave things alone for a full month (it doesn't sound as if you or your husband were going to be able to get any sleep at all!). As I said earlier, in an ideal world, it would have been nice to first bump her up to the total of 40 mg. But I'm really anticipating that she will do fine on the 60 mg., at least to begin with. Over time, it may turn out that her dosage does need to be decreased. We'll just have to wait and see.

As for your vet...I would be lying if I didn't say that some of her statements raise red flags for me. But this is what I am guessing (and mind you, this is TOTALLY guessing). It sounds as though she has had greater experience with Lysodren. It may even be the case that Katie is her first trilostane patient. But for whatever reasons, she decided to give trilostane a try, and is incorporating the feedback from a specialty endocrinologist (and consultation is a very good thing). However, given Katie's symptomology, she is impatient about seeing solid results. So if the trilostane doesn't "work" quickly, it appears she is going to want to bag it and move back to her comfort zone with Lysodren. So this is a point where you may end up butting heads again. Because I am with you -- since you've already started with the trilostane, I would want to give sufficient time to make dosing adjustments prior to giving up altogether. It may also be the case that you would need to allow a "wash-out" period during which Katie would receive no medication at all. This is definitely recommended when switching from Lysodren to trilostane. I can't remember off-hand whether the same is true when switching the other direction. Mind you, if your vet is experienced with Lysodren, I would not have worries about Katie being treated with that drug. It is safe and very effective when used properly. But if Lysodren is her preference, it would have been a lot easier on you had she just started out with the Lysodren in the first place! Since you have begun with the trilostane, it would be nice to give it a fair chance.

So what to do with your vet... Since you don't feel as though you have good options to switch, it will be a challenge to figure out how to get what you need from her. I am still hoping that she will be getting back to you with answers to your questions. And as long as Katie DOES do well on the dosage increase, you might as well get yourself some brownie points for following her recommendation ;). I would simply be honest, and tell her that at the time you sent the email, Katie seemed to be improving and you didn't want to rock the boat. Over the weekend, her condition worsened, and you opted to proceed just as your vet had instructed.

From here on out, you'll just have to take things one step at a time. I know that is hard. But with every day, you are becoming more and more knowledgeable yourself. So hopefully you will be better armed for proactive discussion with your vet prior to the times when actual decisions have to made as you move futher down the treatment road (if she is willing to engage in proactive discussion, which I so hope will be the case!). And I will add this. As you have already gathered by now, there is still a lot of variability in what different experts recommend in terms of trilostane dosing. In my own opinion, that is one "downside" about trilostane vs. Lysodren. The recommended Lysodren treatment protocol seems to be much more clear-cut.

So even though our experience here is such that we encourage people to start low and go slowly with once daily dosing, your vet's recommendation of 30 mg. twice daily is not "wild and crazy." There are other specialists who would have started at that dose, and who also prefer to give the medication twice daily. The important part will be to see how Katie responds. And as careful and loving as you and your husband are, I don't worry at all about her being monitored closely.

Marianne

[labblab]

We took into account all that you and everyone said, weighed it against what we are seeing with Katie and the final reason is we only have enough pills at this point for 6 more days - her next stim test is due approximately April 27 - so given that, we decided that we would give it a few days at the double dose and see what happens.

Me, AGAIN...:o Just wanted to add one more thing. As long as Katie seems to be doing well with the dosage increase, I would wait for a couple of weeks before retesting her. That is Dechra's recommendation: to retest 10-14 days after any dosing change. And since you are already fearful that your vet will want to jump the gun and make additional medication alterations, I'd probably choose to wait the full two weeks to allow Katie to settle in more thoroughly to this increase. Of course, if Katie seems "off" to you or is doing poorly, then you'd want to test sooner rather than later.

Marianne

[Dollydog]

Marianne has said it all and in much more detail than I could ever think to do. Will be watching for your updates.
Jo-Ann :)

[Spiceysmum]

Hi Karen,

Hope the second dose went well and you managed to get some rest!
Waiting for an update.

Linda and Spicey

[Mrs. J]

Hi everyone!! So far so good...

Thank you so much, you are all so awesome!! Marianne, thank you, so very much! :) I agree with everything you are saying, in fact you addressed some things I was going to be asking about but had not yet!! I am not in a rush to switch to the other med, I want to give this one a chance (given no ill effects of course) and what to say to the vet about this was perfect, thank you!! :) As far as the retest, I was going to ask about that also, I agree that we should probably give it the full 2 weeks to actually work and give it a chance.

Katie is very upbeat today, seems normal - I can only hope and pray she stays this way. She ate some of her food before her pill, didnt finish it so we had to give a snack to ensure food in her stomach, which she absolutely did enjoy. This is not out of the ordinary for her at all. She didnt go back to the food after the snack or pill (as sometimes she does, sometimes she doesnt) so that will be something we will watch, but please know that Katie is and has always been a terribly, terribly fussy eater.

So this is where we are right now, I will keep the updates coming!! Thank you!

(oh by the way, we have both managed to sleep - so far so good on that - hopefully that will continue! :) )

[mypuppy]

Hi there Karen,
I am so happy you are feeling a little bit at ease with all that is going on with Katie, and that you are seeing even a tiny bit of improvement. How awesome! I am even more thrilled you and hubby finally got some sleep--it does make a world of difference huh! BTW, I'm reflecting on one of your earlier posts today wherein you ask if anyone believe in prayers here, and to please pray for your precious Katie. Sweetie, you have a lot of Godlike individuals right here, standing firm on their faith and keeping their faith and prayers going for your baby Katie. Prayers and these wonderful people have sustained us all through this not so joyous ride. With all that said, you can rest assure your Katie will not be forgotten in our holy prayers. God bless and tight hugs, xo Jeanette and Princess

[labblab]

WHEW!!!!!!! Karen, I am so relieved to read your update about Katie!! :) :)

That is great news that she is behaving normally, and hopefully you'll soon see some improvement with her evening thirst and urination. Just keep those updates coming, ya hear?? ;)

Marianne

[Mrs. J]

Hi all,

Sorry for the delay in updating, but I was trying to wait till I had something substantial to report on.

Well, this the scoop: Last Saturday, after much turmoil (as you all know) we increased Katies dosage to 30mg 2X daily. Has been going very well. Seem to notice some decrease in thirst and in urination. I hate to report that because last time I did, she reverted
:( . I dont want to jinx it this time. Im not supstitious, but Im just so nervous as you can all imagine.

To date, the vet has still NOT emailed or contacted me after what I reported to everyone that I had said in my email. However, I also did not email her (until this evening) about the fact that I actually went ahead and increased her dosage as she suggested. Nevertheless, in my opinion, she should have responded to my other email as I had a few concerns that I wanted her to address. The reason was simple that I did not contact her until tonight - because there was no emergency, just some concerns. Secondly, I wanted to have something substantial to report to her also and third, I knew I would need to contact her about now for a refill to the med and some testing logistics.

I contacted her early this evening, which would have given her plenty of time to respond to me, in the past she would have. Nothing at all. This is very upsetting and quite frankly disturbing to both my husband and me. Well, in this email, I asked about some logistics regarding the test late next week (time schedules etc) and I also let her know that I need a refill on the Vetoryl by tomorrow evening, and I also asked her how she wanted to proceed on the thyroid issue (Katie is on a thyroid med) since she will be due shortly for a refill in that also. At the very end, I AGAIN mentioned that I would like all of Katies numbers so I could follow her progress or lack thereof.

OK, now having said all that, I do have a concern that I want to ask all of you about - I havent even tried asking the doctor yet for obvious reasons. But heres the thing: Last night Katie pooped on the floor on the way outside. She did indeed finish once she was outside, but started in the house, without even asking to go out. This is very out of character for her. It was NOT diarrhea. To be graphic, it was quite firm and well formed. (sorry for the visual, but thought it was important to point that out). A few weeks ago, she did the same thing. This was shortly before the start of the Vetoryl. At the vet, when we had her last test early last week, she did it there too, but we brushed that off to nervousness.

However, just a little while ago, when I brought her outside, she went again - this is very out of character for her. She has not been eating any more than usual, and she is completely normal otherwise, ie she has a normal appetite and is not lethargic in any way, in fact she wants to play alot!! This was not diarrhea, but the last *piece* was a bit looser/much more watery than the rest. But still *formed*. In all honesty and Im trying to be not to be overly graphic here, but it appeared to me as though it may have just not been ready yet, but almost, if you can understand what Im saying. So basicly, what Im saying is that shes pooping MORE than normal - should this be a concern?

Of course my mind is working overtime and I am stressing about this like you can all imagine! Any thoughts and/or advice?

Well thats my update everyone!! I can see there are alot of people been posting lately - I am so sad to see all the Cushings issues :( but I am glad they have found all of you - they have no idea how lucky they all are!!!

Thank you EVERYONE!

[Harley PoMMom]

Hi Karen,

I am so sorry you are having this issue with Katie's vet and I hope and pray you hear from her soon.

Re; the poop, the more details/graphic, the better for us, heck we even have a poop chart! :eek::D You say it is pretty well formed, just a little more watery, right? What about color? Any blood and/or mucus in her poop? Is she straining to poop?

Altho I am no vet, I believe her lower GI tract is a little agitated. I've read that giving them high fiber foods can help the lower GI tract, foods like...canned pumpkin (plain, no spices), and fresh or frozen carrots or green beans. You don't need to give alot of these, just a small amount because they can bind her up too.

I am so very happy Katie is doing well on her Trilostane, you both are doing are wonderful job.

Hope this helps.

Love and hugs,
Lori

[AlisonandMia]

I'm wondering if there couldn't have been some sort of hitch with your email to vet - these things certainly happen. Have you checked your "sent" folder to check that you did actually send it ok? And if you included a link in it (and maybe even if you didn't) it could have ended up in her spam folder. I've had several emails in a row from someone come through fine into my inbox only to have another one they sent inexplicably end up in the spam folder.

Alison

[Mrs. J]

Thank you! :)

To my knowledge, there is no blood or mucus in Katies stool. Both my husband and I have had the luxury of seeing it!! :eek: Just seems to be going alot. (Could that be age?)

Still no word from the vet - I did check the spam folder yesterday - there were quite a few emails in it, I went through them one by one to make sure. I also checked the sent folder - according to that, the vet got both emails. I will find out for sure whats up before the day is over though because Katie needs a refill on her med. One way or another, I will speak to SOMEONE at that office today...wish me luck!

[lulusmom]

We've had a similar poopy converation on Rebelsmom's thread and I think like Rebel, Katie is probably just having more bowel movements lately. As long as they are healthy looking poops, I wouldn't worry about it. It is odd, however, that both you and Melissa inquired about increased frequency of poops at about the same time.

http://k9cushings.com/forum/showthread.php?t=1925&page=4

Glynda

[Spiceysmum]

Hi Karen,

How are things going with Katie? Did you get to speak to the vet and get the repeat on the medication ok?

Linda and Spicey

[Mrs. J]

Hi everyone,

Update: I dont want to *jinx* anything, so I am afraid to give news, but so far so good! Katie seems to be doing fine, and there has been some noticeable improvement. But like I said, I dont want to say too much about that cause last time as soon as I did, she reverted. :( I am terrified that will happen again, so we will leave it at that - for now. :)

Yes, the vet finally emailed me. She didnt say much, but she did say that she wished there was a way she could make me less frightened. She said if Katie was going to have a bad reaction we would have some warning. :confused:

She didnt get back to me in time for my refill, so its a good thing I called and checked on it. Its also a good thing I know the correct dosaging instructions because the label they put on the package indicated 60mg 1X daily - it should be 30mg 2X daily!:eek:

She is going for her Stim test next week - the vet told me I could have all Katie's numbers then! I will definitely post them as soon as I get them!!!

I have a couple of questions: Let me preface this by stressing that Katie has gotten her medicine EXACTLY 12 hours apart every single day since we went to twice a day dosing, so please know that. But now, having said that, I know that realistically there will be times where that wont be completely possible since life is bound to get in the way at times. So Im not even sure how to ask this question but - how safe/unsafe is it if I were to give a dose early (say I knew in advance I could not make her 12 hour mark) and what is TOO early?

On the same token, what if I were unable to be there at the 12 hour mark and had to give it late - how late is too late?

And lastly, Im a bit concerned that I may not be able to (in a couple of months, not right now) have some real life issues and may HAVE to switch up her dosing times - so Im wondering is it safe to give her her meds at the 12 hour mark and then the second one for the day at the 11 hour mark?

Does this make any sense?

Ok, lastly, just a general question but how much food should be given with Katie's pills? I have been giving her full meals for the most part and she is dosing 2X daily - is just a snack enough or do they have to be full meals?

Thank you all for being here!! I will keep you all posted for sure! :)

[Spiceysmum]

Hi Karen,

Glad things seem to be going well with no side affects.

I wouldn't think it mattered too much if the dosing wasn't exactly 12 hours apart but as for how far apart is safe I will leave that for someone more knowledgeable to answer!

Linda and Spicey

[Mrs. J]

Hi Linda and Spicey! Thank you! :)

[labblab]

Hi Karen,

I'm glad that your vet has finally gotten back in touch with you, and that you'll be able to get all of Katie's records next week. Even though it's too bad that your vet is not being more communicative, at least the "lines" are still open.

As for your dosing question...I don't think it will be a problem if you are not always able to give Katie her medication at exact 12-hour intervals, especially if you are only needing to "fudge" by an hour or two in either direction. But realistically, I know there will be times when you need to juggle the dosing even more. On those occasions, you may try to be somewhat creative in order to even out the timing as much as possible. For instance, if you know you'll be gone from late-afternoon through mid-evening -- if there is lee-way in the morning, you might want to give that morning dose earlier than usual so that you can also move up the evening dose. Or go the other direction, and wait a bit longer both in the morning and evening. Or on some occasions, you may just need to skip the evening dose altogether. As long as this doesn't happen often, it shouldn't be a major "blip" for Katie. Apparently there is a lot of variability in the speed with which different dogs metabolize trilostane. And I am guessing that can also apply to any individual dog on different days, depending upon activity level, etc. So even though the goal is to keep Katie on as consistent a schedule as possible, you don't need to make yourself crazy over precise timing.

If it turns out down the road that you need to adjust the schedule on a consistent basis, we can talk some more about that later on. Once again, I wouldn't think that being "off" by just an hour or two would be a big issue. But if it regularly needs to be more than that, we can talk over the best approach.

From a logistical standpoint, once-daily dosing really is a lot easier for the pet-owner. And that's why many vets do endorse once-daily dosing unless the target therapeutic cortisol level has been reached per ACTH testing, but symptoms are not resolved adequately throughout a 24-hour time period. Not that you need me to offer out yet more editorial comments about your vet's dosing recommendations...:o...but given Katie's initial "post" stim result of 15, an alternative dosing option would have been to just increase her once-daily dose. Having done that, if her next ACTH test showed that her cortisol had lowered into the desired range, but she was still showing symptom rebound, that's the point at which many vets would have switched to twice-daily doses. But at the higher once-daily dose, you might have seen sufficient symptom resolution throughout the day such that adding that "inconvenient" nightly dose may not have been necessary. I only say all of this because if twice-daily dosing really presents a problem for you later on down the line, you may want to revisit the notion of giving once-daily dosing a more extended trial run. But that's more than you need to worry about right now!

And last but not least, as long as Katie gets the evening dose with a decent snack, I'd think that would also be fine.

Good luck with your ACTH test next week!!!!!!
Marianne

[Mrs. J]

Hi all, (thank you so much Marianne!)

An update...Katie has been doing fine, until now...

Let me tell you whats going on: She has a specific *time* every night that she usually poops and as usual, she went out this evening at that time. She didnt seem to want to go, so hubby walked her and walked her...finally, after quite a while, she went. Nothing unusual about it, meaning no diarrhea, except for her not seeming to want to go very fast, he was ready to give up, she didnt seem to want to go.

Fast forward to a little bit ago, which was a few hours later, and I took her outside, and she just had diarrhea. Not alot, just a little little bit, she was even straining - you could see her straining to try and get it out, it wasnt just *pouring* out of her, it was only a little bit. She strained alot, that much was very noticeable. When she was done, she up and went to the door as usual.

Right before this, was her mealtime. I took her out before her meal as usual, she did her usual urination, came right in. She didnt seem to want her meal, but please take note that this isnt necessarily unusual for Katie. Katie can be EXTREMELY fussy. Also a bit of history on Katie: Since she was 8 weeks old, she has a what the vet called a "hyperacidic stomach", meaning if she didnt eat, she gets sick and then of course she didnt want to eat. So her whole life has consisted of unique ways to get her to eat so she wouldnt leave herself empty and get sick (meaning bile comes out). Once she was put on special food years ago, I took to hand feeding her that to make sure she ate. Sometimes she needs me to hand feed her still, sometimes she will eat it on her own. Tonight, I had to hand feed her - but lately she has been eating on her own. Not sure what to make of that. However, I am thinking it was just typical Katie because as soon as she was loose from me feeding her, she went right for the cat food, which she loves. I let her have 4 little bits that the cat left behind. She seemed to enjoy that immensely.

Ok, then right after that, as per usual, I let her out again - this is standard procedure - for another urine break. This is a habit we got into when she was drinking excess amounts of water. It had to be that way or else she was going in the house. Instead of the usual, she decided to let out that bit of diarrhea instead.

The scary thing is I had just given her 12 hour dose of med right before this!!!! :( Now I dont know what to do. She seems absolutely normal except for that little episode. She hasnt had diarrhea for years, so it has to be associated with the med. :(

She is NOT lethargic, she seems ok with her food intake (I will know for sure about that shortly as she ALWAYS wants a small snack before bed).

The good thing is she is scheduled for her stim test tomorrow, but not till tomorrow evening at 6 PM est. Now - what do I do? She will be due for another dosage before then (and the timing has to be accurate for the test)...so what do I do? If she has no more episodes of diarrhea, do I go ahead and give the dose? Do I skip the dose and if I do, how do they accurately give the test?

I am ready to cry here, WHY would she all of a sudden react to the med when she has been absolutely fine for over 2 weeks? I just dont understand...

Thank you...Im sorry, Im just really lost and upset right now.

EDIT: Just gave Katie her before bed snack, she freaked out she wanted it so bad - no appetite problems here! She also went out and just urinated, no bowel movement at all. Right before the snack, she really wanted to play also. So no lethargy either.

Just a thought here: Im wondering if the small bit of diarrhea could be simply related to the increase in her *snack* foods she is getting as of late - before we started on Vetoryl, she was eating a tremendous amount of food, so her need for snacking was almost at zero. (I was told due to her previous stones she had that her sticking to her diet was a necessity, so therefore she was only given a snack when she didnt eat so she wouldnt get sick - always gave her a small one before bed though) Obviously her increase in eating was due to her Cushings, but at the time I didnt know it. Oh and the snacks she is getting are the snacks she always got when she got them, so they arent new, but have increased alot lately due to the fact I am trying to make sure she has enough to eat with the meds. That is why I asked the question in my previous post about how much she needs to eat with the capsule as I really dont like giving her alot of snacks since they arent good for her.

I imagine I could be onto something, or just wishful thinking. :(

[labblab]

Karen, I'll write more later. I'd go ahead and give Katie her trilostane as usual so that today's stim test will be accurate, BUT...if she is having the test at 6 PM, then how will it be 4-6 hours after her dose (per Dechra's testing protocol) unless she's due for her trilostane at 2 PM???? The test timing seems really "off." :eek:

Marianne

[labblab]

I'm back again with another quick note. But all of a sudden a light bulb went off, and I am wondering whether Katie also had her first monitoring test performed at 6 PM after having received her trilostane dose in the morning? If so, that would definitely explain why there was very little improvement in her first stim result. By that many hours post-dosing, her cortisol level would have been returning to baseline. The goal of the ACTH testing is to gauge the trilostane at the point that it is MOST effective in the system, not the least effective. The studies indicate that peak effectiveness is achieved approx. 1 1/2 hours post-dosing. It remains at that point for several hours, but then cortisol starts returning to baseline at the 12-18 hour mark. I'm so sorry to keep raising so many question marks for you, but I'm really puzzled by the timing of Katie's test...

Marianne

[Squirt's Mom]

Hi Karen,

One thought on the treats...pet food manufacturers, including treats, will change a formula or recipe and they don't have to let the consumer know this change has happened. Unless you compare ingredients, nutrient profiles, etc. on the packaging from the old to the new there is no way to know. However, if you call the company and ask they will sometimes tell you.

I am NOT saying this is the problem...just wool-gathering here for possibilities and remembered that happened with a food we fed one of ours a few years ago - the company changed her kibble formula and she got diarrhea bad. :eek:

Hope things improve and she stops scaring you with the poopies. Heavens, like we don't have enough to worry about! :rolleyes:

Keep your chin up!
Hugs,
Leslie and the girls - always

[Mrs. J]

Hi Marianne and Leslie!

So far so good since my update last night...

Marianne - Katies dosage schedule is 1:00 PM and 1:00 AM. Strange I know, but the vet (and all that I read) stated that we needed to time it around our schedule and that is the only one that works right now, I may need to alter that in a couple months though. Therefore, the test time is 6:00 PM which puts it right at the 5 hour mark and then the next would be the 6 hour mark. All of her testing has been at the same intervals and timed the same way. Our vet is 24/7, so this is why it is possible.

Leslie - That is a good thought. I do know that the more I have thought about it, have barely slept, (every noise Katie has made I have woken up! :eek: ) the more I realize how much more snacking than usual she has had. But, like you said, cant be sure its that.

Her dose is due shortly. Katie was just sitting here eating her food, she does seem to have an appetite and she seems fine - so far. Unless something changes in the next 15 min, I will give her the pill and go ahead with testing!

Thank you!! Will be updating...

[labblab]

Marianne - Katies dosage schedule is 1:00 PM and 1:00 AM. Strange I know, but the vet (and all that I read) stated that we needed to time it around our schedule and that is the only one that works right now, I may need to alter that in a couple months though. Therefore, the test time is 6:00 PM which puts it right at the 5 hour mark and then the next would be the 6 hour mark. All of her testing has been at the same intervals and timed the same way. Our vet is 24/7, so this is why it is possible.

Whew! The timing and testing schedule makes perfect sense, now ;). I wasn't even considering that you might be on a less conventional schedule...:o And yes, you're certainly right -- as long as the schedule works for you, that's all that matters.

Here's hoping for a good ACTH report, and no more icky poops!

Marianne

[Mrs. J]

Well, we went to the Stim test this evening. Katie pooped while out in their yard - was fairly normal, color and consistency, except the very end was a bit watery, or loose...but most of it was good, maybe a bit on the softer than usual side, but all in all, pretty normal - like I said except for the end which was a bit watery. Again, she seemed like she may be straining...weird?? :confused:

My vet was there, I wasnt really able to talk to her except quickly in passing in the hall. I dealt with the tech for the most part and I let her know that Katie had a diarrhea episode last night and she needs to relay that to the doctor. Her response? "Dr is not really worried about that right now as she feels she will probably be switching Katie to Lydrosen after this anyway, she said that you would probably not be too happy about that" - to which I responded, "no, shes right, I'm not".

It seems that she may have already made up her mind before she even sees the numbers! :( I see a fight coming if Katie's numbers show some improvement...because shes going to want to switch her no matter what, I just know it.

Ugh...Anyway, I do have ALL her numbers!!! :) Bad news is that I have her entire record, so I have to try and pick out the numbers from this thing, somehow someway...I can clearly see the numbers, but they are just everywhere and kinda not labeled clearly so it may take me a bit to get them to you all. I will do my best to get them posted by tomorrow, barring no episodes from Katie during this time!!!

Oh I dont have tonights numbers yet...so I assume I continue giving her the meds as usual, of course I wasnt told much while there...

Thank you!!!

Karen and Katie

[Mrs. J]

Hi everyone,

Just heard from the doctor. She gave me these numbers in an email, I do have the complete file as I said above, is it still necessary after getting these? If so, I will post - please let me know.

Original – Low Dose Dex Test – Pre – 9.36 Post 6 Hr – 3.68 Post 8 Hr – 15.7
ACTH Stim Test – Pre – 8.3 Post – 9.4

4/13 ACTH Stim Test – Pre – 11.1 Post 15.8


Today ACTH Stim Test - Pre – 4.3 Post 5.6


Normal Resting Cortisol : 1.0-4.0


She asked me to PLEASE not over analyze them, as they are closer to normal than before. She told me to continue the twice a day medications and then we will check the ACTH stim in 4 weeks. :o

(I did notice that the numbers she gave me for 4/13 are not the same numbers as the tech had given me over the phone that day...:confused: so if you notice that, I have absolutely NO explanation for it. Im just as confused as you are. As I said, I do have her file here and the numbers I just posted are what is on file, not the numbers the tech gave me.)

[Spiceysmum]

Hi Karen,

Those latest ATCH numbers look really good, you must be relieved. I can't see why they would want to change over to Lysodren when the Trilo seems to be working ok. Hope Katie continues to improve.

Linda and Spicey x

[Mrs. J]

Thank you Linda and Spicey!

She said in the email that she is happier with these numbers and wants to keep the dosage as is for now, (on the Vetoryl) and retest in 4 weeks. So she is wanting to stay with this med for now, contrary to what she said at the office earlier!! :D

Are these numbers dropping too fast? I hope this dosage is ok for another 4 weeks, thats my concern right now...am I reading too much into this? :confused:

(Im not really understanding if we are at a maintenance stage or what here...sorry)

[zoesmom]

Hi everyone,

Original – Low Dose Dex Test – Pre – 9.36 Post 6 Hr – 3.68 Post 8 Hr – 15.7
ACTH Stim Test – Pre – 8.3 Post – 9.4



Hi Karen -

Question: The above numbers are from the diagnostic testing, right? And are you sure they are right for the ACTH? If I'm reading yor posts correctcly, you said that they messed up and did the ACTH by accident when the vet actually wanted the LDDS done. I ask because the first ACTH numbers are odd in view of the later LDDS numbers. I'm wondering if maybe they gave the stim drug and then waited 8 hours, thinking they were doing the LDDS instead. (You said Katie was there at the vets for two all day tests.) The two sets of numbers don't make a lot of sense, otherwise. If that's what happened, then the initial ACTH numbers are worthless as the second blood draw on the acth should be done at 1 - 2 hours (unless they were transcribed wrong.) It's just strange and if they messed up that significantly on the original ACTH. it really makes me wonder if they know what they are doing there. (The LDDS does indicate cushings although that second #/blood draw is usually done at four hours, not six hours . . . but less of a concern, I guess, as the 6 hour shows suppression and the 8-hour shows significant rebound.)

Beyond that - and assuming that her cortisol was much higher at 1 or 2 hours post-stim drug on that original ACTH - then the subsequent ACTH tests (after she started taking the trilo) do suggest that she's made good progress. Those last ACTH numbers are actually in a really good spot. The goal for a trilo dog is a post number between about 1.5 and 7-ish. And Katie's right there in the middle. But was just curuious about that first ACTH as it doesn't sound right. Sue

PS Yes, I would definitely say you are at a 'maintenance' stage (which with trilo means you'd continue at the current dose and retest in 3 months. It looks like you did one acth at about two weeks into tx and then this last one at about 3 weeks after that.) But STILL continuing to watch for any signs of cortisol going too low as it can continue to drop steadily over the first few weeks for some dogs.. Any sign of listlessness, loss of appetite, diarrhea, vomiting, weakness in legs, then you'd want to retest sooner. But Katie has a little wiggle room with those current #'s)

PPS -- If they did mess up the timing of that initial ACTH and you paid for it, then you should demand a refund!!!

[Mrs. J]

Hi!

Im not totally sure how to answer your question Sue, I do have her file here, but its SO hard for me to decipher...the vet did tell me they did the opposite test the first time (as they usually do the other test first) and then the second time they did the correct test. At the time, she also told me since we were charged for the wrong test, all I was paying was the difference the second time around. As I figure these records out (or try) I will let you know if I can answer that question better.

The vet wants me to continue onward at the current dosage for now - 30mg 2X daily - and retest in 4 weeks, not 3 months. I am concerned about her dropping too low though, Im a bit scared...like I posted earlier, she did have that small bout of diarrhea a couple of days ago.

Her back legs are a little weak, however, Katie was born with NO hip or knee sockets (something we found out a few years back when she dislocated her hip) and she always has shown little to no symptoms of that, and its probably because of sooooo much cortisone in her system - until now. Shes ok, but you can see a little difference. Like we were told, she was so pumped full of *cortisone* she was basicly being treated naturally for her handicap. So we kinda expected this.

[Mrs. J]

Hi Karen -

It looks like you did one acth at about two weeks into tx and then this last one at about 3 weeks after that.)

I just wanted to clarify this: we did another test 3 weeks later, yesterday actually, but the first week in that 3 week period was at the old dosage (30mg 1X daily), so this current test only covered 2 full weeks at the new dosage of 30mg 2X daily.

[labblab]

Karen, I think the results of the new ACTH sound really good. :)

But I have to agree...those initial diagnostic ACTH results (8.3/9.4) are pretty screwy in view of the fact that Katie's initial monitoring "post" result AFTER starting the trilostane was 15.3. :confused:

To that extent (and assuming that the diagnostic ACTH results are accurate), I can see why your IMS was questioning whether the trilostane was doing anything at all. But I think the current results are keepers. If you're willing, I do think it's a good idea to test again at 30 days. But unless you see more negative behavior changes, I wouldn't worry unduly about Katie dropping too low before you retest. If Katie's pre-treatment "post" result had been >30, for instance, then the drop to 5.6 would be much more dramatic over a short course of time. But a drop from 15.3 to 5.6 is not as extreme.

Hopefully, the "poop" and back leg issues will be only transitory -- or at least not worsen. Do keep updating us!

Marianne

[zoesmom]

Hi Karen -

Since there WAS a dose change just a couple weeks ago, then yes, I agree, it is best to get that next ACTH in 30 days rather than wait 3 months. As far as that first ACTH goes, I'm betting that the test was just done wrong, given Katie's later test results and the LDDS, which was pretty high for an LDDS. IMO, I think we can probably just forget about that first one altogether (maybe they had a new vet tech on duty that day!;):rolleyes:) So not to worry. It sounds like everything is progressing nicely. Just continue to keep a watchful eye on Katie this month. :):):) Sue

[Mrs. J]

Hi everyone!

Sorry for the abscence, but I wanted to wait until I had more observations/test results in order to update.

Well, its been 30 days since Katie's last Stim test. We had that done, now are awaiting the results. Will post the numbers as soon as I get them.

Her last results were really good, as you can see above. Since her last test, here are our observations/issues over the past 3/4 weeks:

After the last Stim test, Katie was taken off of her thyroid medication as the vet told me she checked that and it was *double normal*, indicating that Katie had way too much thyroid medication and that she no longer needed it. However, as a precaution, we had it rechecked when we just had this Stim test done and are also waiting results. It should be noted here also that shortly after we stopped giving her thyroid meds, her water comsumption decreased alot! I do know (from a few years ago when we first started thyroid meds) that if the dose was too high, it will cause them to drink excessively like the Cushings did. So maybe her water intake had not decreased much from the trilostane because she was over medicated from the thyroid. But now, she seems to hardly ever drink!!! Im not really overly concerned about this though, I was at first, believe me, (if I should be PLEASE tell me) because she does seem to go drink when she needs too, even though its only like 3 times a day, and drinks enough to satisfy herself. Im guessing she is giving herself what she needs. (hopefully)

Her appetite is back to *typical* Katie - which means simply that she is back to being as fussy as ever!! :D She will eat a snack anyplace, anytime, but will fuss fuss fuss over her food, but eventually eat it. This is how she used to be before the Cushings appetite took over. No vomiting or any other problem there.

Her *poop* issues have now reversed themselves - she seems to maybe be a bit constipated actually. For the past 3 weeks or so, she has missed alot of days actually going!!! We walked and walked and walked her, but she just wouldnt. However, when she does go, it is quite alot, and very solid. No lose stools at all.

Lethargy - We have noticed that Katie does tend to sleep alot, and for that matter, seems to sleep alot more soundly than she used to - not sure whats up with that, normal or not? :confused: However, if you attempt playtime with her, she will play and play hard!! Alot of times she will initiate playtime with us also, so even though she sleeps alot, she does welcome her playtime. I hope this is an ok sign cause like I did say, she does like her sleep too!

My biggest issue at this time is her hind area. :( I am getting more concerned about that as each day goes on. Like I had mentioned before, Katie has had issues with her hind area in the past. Almost 4 years ago now, we found out she was born without any hip and knee sockets. We found this out when she dislocated her hip and xrays were done. Over the years (and fairly quickly after this incident) she was recovering very well. We assume (my husband and I) that the Cushings played a big part in her recovery as all that cortisone helped her with the pain! Anyway, we were told at the time of finding out about her lack of sockets, that as she aged, arthritis was sure to set in and eventually she may have a bit of trouble. Well, we are thinking this is now the time. Any thoughts / suggestions / recommendations on this? We only have 2 tiny stairs for her to get outside, but she will fuss and fuss about using them - we practically have to drag her in the yard to get her to go...when she first gets up from a sound sleep she has trouble...shes stiff like...when she plays she will run, like a rabbit, uses both legs to hold her up, she does play hard when she plays! But when she gets up from a lying position, her legs are really really weak. She has trouble standing for any length of time also, you can see her one leg giving out as shes standing...

Given everything I have just said, I hope that her numbers have not dropped too low, that concerns me - however there is no diarrehea, no vomiting...we await the numbers at this point and given the history of working this stuff out with my vet, Im a bit concerned. Hopefully her wanting low numbers are in line with what Katie needs. I did see it mentioned in one of these threads that sometimes a dog needs a slight bit higher numbers to maintain a good lifestyle. Hopefully my vet will work with us if that is the case - history hasnt been too kind in that area, as everyone already knows.

Thank you again - EVERYONE!


Edit: Almost forgot - she is currently on Simplex antibiotic for a nasty neck infection she had going on. Her neck has just about cleared up now, looks great, but the vet wanted to give her another round just to get the rest of her skin 100%. She has had terrible skin problems for a long time now. She is also having issues with one of her eyes, seems to be bothering her. May need to have that checked if it doesnt get better.

[Casey's Mom]

Hello to you and Katie,

My Casey's arthritis became quite bothersome last year once her cushings was under control. I now have her on L-Glutamine and Glucosamine Chondroitin supplements daily as well as monthly Adequan injections from the vet. These have all improved her mobility greatly. She is now 14 and goes up and down 13 steps to the upper level of the house many times in a day. She also runs at the park daily so I can attest to the fact that all of these things have helped her and improved her mobility.

Good luck with Katie,

[labblab]

Hi Karen,

It's good to see you back here, and we'll be anxiously awaiting the results of Katie's stim test. I'm so sorry that you are seeing these mobility issues, but I'm guessing you may be right -- this could be the "double-edged sword" from lowering her cortisol. But if so, I'm hoping that the comments from Casey's Mom will make you feel more optimistic. And I think it's also true that Katie's ideal treatment goal may be a bit higher than would otherwise be the case if she were not suffering from these orthopedic issues.

So let's see how her ACTH results turn out, and then we can go from there.

Marianne

[Mrs. J]

Ellen and Marianne,

Thank you so much for your replies.

Ok I need help PLEASE PLEASE!

I am in tears right now. Just got off the phone with the vet tech and she gave me Katies numbers - my vet wants to start Katie on Lydrosen IMMEDIATELY.

The test was ran last Tuesday, here it is Monday. Problem 1 as I see it: she claims she was out sick, just got to run the test today - almost a week later? huh? I asked if the blood was still good, she said yes, it keeps for 2 weeks. ok....

Problem 2: on 4/13 Katies results were:
4/13 ACTH Stim Test – Pre – 11.1 Post 15.8
on 5/4 her results were: Pre – 4.3 Post 5.6

Today: Pre 12.3 Post 15 huh??? this makes NO sense!

Doctor on 5/4 said she liked what she saw very much, keep the course of treatment. We have done that, Katie seems significantly improved as my last post indicated. (although coincidence or not? but Katie has drank alot more today... )
Also worth noting that the tech has NO record of the 5/4 numbers...

Problem 3: They want to start her on Lydrosen IMMEDIATELY. Ummm isnt there a waiting period? I asked that, she said she didnt know and that I needed to talk to the vet, I told her straight up that I cant even get the vet to talk to me!!! I told her from the research I have done this all doesnt make sense and that I DO know there is a waiting period whereas the tech then proceeded to tell me that she has been doing this for 13 years and has many dogs on Lydrosen and she feels she knows a bit more than the internet. ok...

I dont know what to do...I have some health issues of my own that I have to tend to and I am stressed to the max with all this crap...I know what the doctor is going to tell me, she is going to say that the numbers speak for themselves...PLEASE ANYONE, WHAT SHOULD I DO? I do know that this vet allows payment plans and her hours work for us (24/7) so switching is something that is not really an option...HELP!

[labblab]

Karen, I only have a minute to post right now, so I'll come back later with some thoughts. I wanted to let you know that I've read your reply, however, and I FEEL YOUR PAIN!! :( :mad:

Marianne

[Mrs. J]

Thank you Marianne...My husband and I are in shock...

We have to make a decision, we are out of Vetoryl. They pretty much have given us no choice, tech just called back, told me in no uncertain terms that I have to trust in them and NOT the internet! She said they work with the University of Tennessee and all their stuff comes from there. She said the doctor is very concerned with Katies number spiking and that she is little upset with me...yeah the feelings mutual right now believe me...ugh :(

Im in tears here. Hubby is on his way to get the lysodren. The tech said from this point on she will be the inbetween person with me and the vet. As Im typing this, tech just called and said now Katie has to restart Thyroid pill again also, half the dosage she was on before. I am SO confused its just so overwhelming.

[labblab]

Karen, STOP and take a deep breath!!!!! There is absolutely no need to rush with any treatment decision. And you absolutely should not be starting up with the Lysodren before speaking directly to the vet and having the opportunity to discuss all your concerns and questions, including the importance of a wash-out period.

It will not harm Katie to go without any medication for the day or two that it may take to sort out a decision here. You should never feel bullied into rushing into treatment!!!!!! And by the tech, no less (who, correct me if I am wrong, has given you misinformation in the past...:mad:)!

More later, I promise.
Marianne

[AlisonandMia]

Hi,

I too feel your pain!

Unfortunately it is not so much "the Internet" (whatever that may be, heh! heh!) saying that you must wait a month between using Lysodren and Trilostane - it is Dechra, the manufacturer of Vetoryl saying this. And it is based on research and clinical experience. When Vetoryl (trilostane) first came out vets were switched from one med to the other without a washout period but experience taught that a washout period was necessary. We have even seen that here - particularly when going from trilostane to Lysodren. It is as if the trilostane makes the adrenals somehow very, very sensitive to Lysodren for a while.

I would suggest that you insist that your vet ring Dechra and ask about this. Another vet did just that the other day having argued that you could just switch and was told in no uncertain terms that a 30 day minimum washout was mandatory. Here's a link to Dechra's US site (the "contact us" page: http://www.dechra-us.com/Default.aspx?ID=365

And here's a quote from their product insert re the Lysodren (mitotane) to Vetoryl (trilostane) switch (I can assure you the same applies when switching from Vetoryl (trilostane) to Lysodren (mitotane):


Mitotane (o,p’-DDD) treatment will reduce adrenal function. Experience in foreign markets
suggests that when mitotane therapy is stopped, an interval of at least one month should elapse
before the introduction of VETORYL Capsules. It is important to wait for both the recurrence of
clinical signs consistent with hyperadrenocorticism, and a post-ACTH cortisol level of >9.1 μg/dL
(>250 nmol/L) before treatment with VETORYL Capsules is initiated. Close monitoring of adrenal
function is advised, as dogs previously treated with mitotane may be more responsive to the
effects of VETORYL Capsules.


(http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf)

Good luck and keep us posted!

Alison

ETA: As Marianne said - there is no rush. A months of untreated Cushing's is most unlikely to do any harm in the medium to long term. Unlike a lot of conditions, Cushing's is not something that generally requires urgent treatment . We messed around for something like a month before starting Mia's treatment - the vet wanted to (a) make sure he was up to speed on everything (b) I was up to speed on everything before proceeding. We treated with Lysodren with excellent results BTW.

[Harley PoMMom]

I found this too:
...when switching from trilostane to lysodren a washout period of one month or evidence of adrenal function on stimulation testing is recommended.

http://veterinarycalendar.dvm360.com/avhc/content/printContentPopup.jsp?id=562352

Love and hugs,
Lori

[frijole]

I just argued with my vet over this - he called Decra and there is a 30 day minimum waiting period. Guess the internet wins. ;)

[Mrs. J]

*Telling* my vet to do anything at this point is IMPOSSIBLE. She wont even talk to me, shes upset with me for questioning her you know.

What is bothering me the very very most here, BESIDE the fact that the vet is treating me in this way, is Im not sure I trust these numbers!! Is it possible that these numbers would do that in a 30 day time frame? AND being that Katie is showing NO signs ??? This is killing me - someone tell me that this is possible and I might believe it. But honestly what Im thinking right now is that they messed up the test!!! Maybe used another dogs blood - ummm waited a week - even thinking back, the blood was drawn at the 5 1/2 mark then 1 1/2 hours later because they were very busy last week...

PLUS when she did the thyroid test on 5/4 by the way, she claims that she didnt run that test at the same time, that she used Katies *frozen* blood from the same day and ran the test a week or so later...came back *double normal* so she told me to take her off thyroid immediately - I did, saw more immediate results with Katie drinking less water (which was a good thing).

We retested the thyroid this time just to make sure, now being told that she needs half the thyroid meds she had before... a .1 2x daily instead of .2 2X daily...

[AlisonandMia]

even thinking back, the blood was drawn at the 5 1/2 mark then 1 1/2 hours later because they were very busy last week...

Aaarrgghh! Sounds like they messed up the test. It needs to be done within 4 - 6 hours of dosing. Looks like the second draw was at about 7 hours. May not explain everything but I bet the numbers would have been better. If Katie is asymptomatic then I think that that counts for a lot and higher numbers are "allowed" with trilostane if symptoms are good anyway (although not that high usually).

Has your husband tried to deal with this vet. As you no doubt know, sometimes some people listen better to a man - shouldn't be like that but it can be. I've seen it again and again, unfortunately.

Could be that the tech is doing a lot of "gate keeping" and quite a bit of this may be coming from her rather than from the vet. Seen a bit of that too..... Gggggrrrrrr.....

Maybe it could help if you wrote a letter (not an email) setting out how you feel and both sign it (or maybe just your husband sign it)?

Alison

[Mrs. J]

I agree with what you are saying. Honestly, Im thinking since the test was just run today - one day short of 7 days later that either A) they mixed up the blood or B) the blood was no good anymore C) they just simply messed up the test! D) is it possible the stuff they inject in her could have been outdated also?

This vet is one we just started using with Katies diagnosis. I dont know what to think, but its more than clear that she does NOT LIKE me very much.

As I was typing this - good news!!! ok this is the scoop, husband is there now getting meds and he spoke to another vet there who is on duty tonight (my vet is HIS boss by the way and the owner) and he claims he is a firm believe that if the dog is showing good signs, " dont fix what aint broke", he said. He reviewed her chart (albeit quickly, but regardless) is recommending sticking with the Vetoryl for now and retest in 30 days - I agree but told my husband to tell them I think a 2 week retest will be better for everyone!!

[AlisonandMia]

As I was typing this - good news!!! ok this is the scoop, husband is there now getting meds and he spoke to another vet there who is on duty tonight (my vet is HIS boss by the way and the owner) and he claims he is a firm believe that if the dog is showing good signs, " dont fix what aint broke", he said. He reviewed her chart (albeit quickly, but regardless) is recommending sticking with the Vetoryl for now and retest in 30 days - I agree but told my husband to tell them I think a 2 week retest will be better for everyone!!

Yay! :):):)

Alison

[Mrs. J]

Yes, Yay!!!! :D

[lulusmom]

Hi Mrs. J.

I read your thread before leaving work and was going to validate what Alison has already told you but no need now. So YAY from me too!!!

[labblab]

Good! Sounds like "crisis averted," at least for the time being. :o

I do have some other random thoughts that I was going to try to put down in writing tonight, but I'll go ahead and wait until tomorrow when I can think straighter. :rolleyes:

Hopefully, you and your husband and Katie will all be able to get a good night's sleep now. ;)

Marianne

[Mrs. J]

Thank you everyone! :)

Marianne - When you have a chance, I would really really love to hear your thoughts. Please post when you can. :) Anyone else have anything to add, I am all ears and would love opinions at this point - this is all so aweful to us. If we are wrong here also, please please we want to know that too.

Alison - I do think you may be right about a bit of *gate keeping* going on too.

This doctor that my husband briefly talked to tonight agreed that Dechra recommends a cool down period for the Vetoryl. He said that some people agree with it and some dont, but he was definitely aware of it. I get the impression that he knows his stuff when it comes to this disease, but at the very least, he seems to be very willingly to talk and listen which is what we need.

How do we get him as our vet now when OUR vet is his boss? I dont want to get him in trouble, or make him refuse us because he was *reprimanded* or something...how do I ask for him without creating a mega mess??

Eta: My husband is now wondering if this doctor was sent out from the back room to *humor* him since he was saying all this stuff in front of a crowd of waiting room people...he said he wasnt be rude at all, but he was asking questions and being firm is all.

[Mrs. J]

I may be totally and completely off the wall here, but bare with me:

I had a thought here - Katie had a Stim test on 5/4 - numbers were really good.

About a week and a half later, she developed a real nasty neck infection (we all presume it was from when they took blood from her neck) and they put her on some ointment and Simplex antibiotic. She was on that for about a week and a half and then her next test was done 5/1. (For the record, she still has 5 days of Simplex left, also for the record she takes it once a day and at the same time as her morning Vetoryl)

Is it possible, at all, that these drugs interact with each other? OR is it possible, at all, that they simply need to be separated in time as to when given? The reason Im thinking of this is because I just recently started taking thyroid med for myself, and was told to beware of many drug interactions (none that I take, but for future info) and other meds that have to be taken separately from my thyroid med if I ever need them...

IF and thats a big IF, the test was done properly, could this be the answer as to the sudden turn around in numbers? Any thoughts on this? Any way I could find this out for sure? (or am I completely off my rocker here? :p )

[AlisonandMia]

Trilostane isn't a very "interactive" drug at all. The main things that it can interact with are certain heart/kidney/blood pressure meds - because some of those meds, and trilostane, both raise potassium levels. Apart from that there trilostane doesn't interact with very much. (Of course the real biggy interaction wise for trilostane is with Lysodren - thus the washout period required!)

The only thing I can think of is that maybe the antibiotic somehow affected the absorption of the trilostane - unlikely and I've never heard or read anything about that. Did the antibiotic cause any diarrhea? (I'm thinking not, because you would have said.)

One question: How do you actually give the pills - do you put them in the food or give them separately and definitely see them go down her throat? I've heard of some weird test results as a result of a trilostane capsule not actually getting eaten or being spat out - sometimes people will find a capsule on the floor some way from the food dish or something. And on the morning of that test did she have her usual breakfast?

With regards the washout period - I guess some have got away without it and not had anything untoward happen. But others haven't and bad reactions are common enough for the manufacturer of Vetoryl (and other authorities) to be recommending the 30 break on any change over. Recently we had a dog here go from trilostane straight to Lysodren (there were some unusual medical reasons for taking the risk in his case) and his response to Lysodren suggests that indeed his adrenals had be sensitized in some way by taking trilostane - he loaded very, very fast on the Lysodren.

Alison

[Mrs. J]

Interesting.

Both my husband and I are extremely careful when administering Katies pills - she has been on various meds for years and I am, unfortunately, way too experienced in giving them. Ugh. I give them 95% of the time (he does only if and when Im not available, which is not very often). I give them by hand right into her mouth. She takes meds way too easy too by the way. Used to it I guess. Once in a while, I mean RARELY, she spits one out, but it is always right next to her and she looks at it and looks at me and waits for me to give it to her again :) So thats not the case.

To answer your other question, yes she is given those pills at the same exact time (within 10 min) every single day. There is only one time in over 60 days that she got one early as neither of us could be here and that was a half hour earlier. She gets the pills with decent food every time, I pay extra attention to those things especially on test day too.

I mean Im thinking its possible that maybe they should not be given together - the only way we would know for sure is if some others have reported on it ?? I dont know, Im reaching here. But Im desperate.

I cant help but think something just isnt right - why would her numbers decrease so significantly and then just boom, go up and over what they were and then some? :confused:

She also had ointment for her neck if that matters at all. Probably not. *sigh*

But I keep going back to that test being done last Tuesday and not run until today!!!! I cant believe that! Oh and the doctor tells me this past weekend in an email that the results were on her desk and that she would look at them today - the tech tells me she never even ran the tests till today. Heh.

[AlisonandMia]

What are the ingredients of the ointment? And what is it called?

Alison

[Mrs. J]

The ointment is Mupirocin Bactoderm Ointment 2%. She had it 2x a day for 3 days and 1X a day for 4 days.

[AlisonandMia]

That shouldn't have affected anything - it's just a straight antibiotic. The reason I asked is that some ointments/creams contain a steroid which can affect test results. I didn't think that under the circumstances that a steroid-containing ointment would be used - which is why hadn't asked earlier.

I really think the culprit here was most likely the timing of the test, possibly combined with stress while waiting at the vet.

Alison

[Mrs. J]

The timing can make that big of a difference? Really?

As far as the stress, in all honesty, this is the first test she had where she didnt seem stressed in the slightest bit! We stay with her during the test...we brought her in, they took her for a bit, we came back out and she laid in the back seat on her blanket and was all happy happy...

Then we brought her back in when it was time and she was in and out rather quickly. Now it was quite warm that day and she did have a drink inbetween tests...thats the only difference.

I want to scream, this is aweful :(

[AlisonandMia]

Well the timing can certainly make a degree of difference, and I guess how much difference could depend on the dog.

Trilostane peaks in its effectiveness somewhere between 2 and 6 hours post dosing. After that, theoretically, the cortisol could be rising. The fact that Katie has benefited from 2x a day dosing does suggests that maybe her cortisol rises pretty rapidly once the dose starts to wear off. As you know many dogs do fine on once a day dosing - presumably the rise is not particularly rapid with these dogs.

I have read that when trilostane is/was used in humans with Cushing's some people were on 6x a day dosing to get an even cortisol curve through the day. I've never heard of a dog needing it that often - the most frequent I've heard of was 4X (one case) and even 3x is very rare - most do fine on 1X or 2X. I mention this to show how variable it seems to be from individual to individual - not to suggest in any way that Katie will need more than 2x a day dosing.(:eek:)

Alison

[Mrs. J]

Yes, I see what you are saying...

The only other difference between this past test and the one before that was the stopping of her thyroid pill.

She was on a .2mg thyroid 2X daily for a few years - vet emailed me about a week and a half/2 weeks (not sure exactly) after the test and said oh by the way, I tested her thyroid with some of her frozen blood and she is double normal and that means you need to stop her pill. I questioned this a tiny bit - asking are we sure its accurate - she said even if it isnt, most of the time she found it wouldnt have come out as double normal.

Now Im told today that she needs to start thyroid again - .1mg 2X daily.

But thats the only other thing different in the testing - would that matter that last test she was on thyroid and this test she was not?

[AlisonandMia]

I don't think the thyroid meds or lack of would make much, if any, difference to the stim results. Others here know a lot more about thyroid issues than do I so it'll be interesting to see what they think.

Alison

[Spiceysmum]

Hi Karen,

OMG what a mix up! Can't offer any real advice but wanted to let you know how I feel for your situation. I would also want to know if blood can be used for testing a week after is taken and could it have been the infection itself, as well as the medication, that increased the stim numbers?

How brave of the other vet to go against his boss and give you more Trilo, it really does sound like you should be with this vet. Unless the usual vet had time to research this and had changed their mind so got him to deal with you to 'save face'! Either way it sounds like you should be seeing this vet, can you not just make your next appointment with him? We have about four vets at our practice and it would not be questioned if we made an appointment with a different one. I know it's better to stick with one as they know the history but I don't think you are going to have much faith in your usual one from now on.

Hopefully now you have got more Trilo you will have a better idea of what is going on after the next test.

Linda and Spicey

[Mrs. J]

Katies first couple of tests were done when she was on Clavamox for a general overall skin infection (she always has them :( ).

Gosh Im trying to remember here...then she had 1 (I think) test done without any antibiotic in her - and if memory serves correctly, that would be when the numbers were the best. However, she did still have skin issues, she always does. So was she actively infected at that time, not sure, but she was not being treated anyway.

As stated, a week and a half or so after the good results, she went on the Simplicef antibiotic for the neck (and ointment). She only stayed on the ointment for 7 days, but right now she is on her second fill of Simplicef to clear up her skin completely because we (the vet via email after what I told her) felt she was almost there when that one ran out. Mostly under front leg areas. She has 5 days left on that.

As far as asking for the other vet when we go for checkups and such, yes we can ask for this other vet - however - all of the communication about Katie is done via email and 1)I only have original doctors email 2)I cant call and ask this new vet questions as he has no idea about Katies case really and the office will just flip my questions to my usual vet and 3)whenever she has tests, the results automatically go to my vet. So, as you see, Im in a REAL bad situation...

As I said before and Ill say again, I just want to work with this woman, I dont want to be her enemy - I just want to be able to communicate and have my questions answered and I want a little participation (at least you know) in my Katies health care. I sent her an email over the weekend with a few questions - the ones I had talked about in my post before the test results today - she sent me an email back early yesterday morning (before results) saying she doesnt possibly have time for that and I should make an appointment to speak to her in the office. (she wants me to pay her for a visit, basicly is what receptionist told me)

I have personally only seen this vet (meaning spoken to in person) on my original visit. Since then, its been techs, receptionists, and email only. She also scolded me for writing too much in my emails.

I just want some real communication, my old vet LOVED me - she praised me all the time and raved about me to the other clients. I am really not that difficult, why does she think this? (I moved and had to change vets, then I had a vet here, but he was too far so came to this one for location, hours and payment options).

[labblab]

OK, here goes with those random thoughts of mine...:o

First off, I'm glad you've gotten a "time out" of at least a couple of weeks. Given what you've told us about the control that your vet exercises over her practice, I'm kinda surprised that the other vet would derail her directive last night about switching to Lysodren. But since he did, I'd encourage you to use this time to gather more information. For starters, you can call Dechra directly in order to find out -- from the horse's mouth -- what their recommendations are regarding switching from trilostane to Lysodren. Once again, here's Alison's reply in which she gives you the contact info and also the quote from the Vetoryl product insert about a switch in the opposite direction: Lysodren (mitotane) to trilostane.

http://www.k9cushings.com/forum/showthread.php?p=32583#post32583

Kim's vet who called Dechra a couple of days ago was also asking about a Lysodren to trilostane switch. Aside from the quote that Lori gave you, I've not seen anything else in writing that specifically addresses switching from trilostane to Lysodren. And I suppose your vet could make the case, per that quote, that Katie's recent ACTH result does fulfill the requirement regarding evidence of "adrenal function":


...when switching from trilostane to lysodren a washout period of one month or evidence of adrenal function on stimulation testing is recommended.

If you call Dechra, however, you can ask to speak personally to Dr. Allen, a vet who is one of their technical reps. He is really nice, and I've talked with him myself on a couple of occasions. With information directly from him, you should be better armed to talk with your vet when the future "showdown" over Lysodren occurs (which it inevitably will, given everything you've told us so far).

If you do want to stay with this vet, I think you must prepare yourself that she is going to continue to urge you to switch to Lysodren. That has been her position from the get-go. Unless you want to make yourself crazy, it seems that you have two options. One is to go ahead and make the switch (but armed with Dechra's recommendation re: a washout period). And mind you, there may not be any reason why Lysodren would not be a perfectly good option for Katie. But you need to be on board the train if that's the route you'll be taking.

Otherwise (and probably regardless), I think the time has come for you and your husband to jointly schedule an office visit so that you can all three talk face-to-face. There has been too much confusion and too many doubts raised via the emails and the vet tech. You'll probably never achieve a warm-and-fuzzy relationship with this vet. It doesn't seem to be her style. But if she is going to remain in charge of Katie's care, you need to have your current questions answered directly. And you need to know what her intentions are for the future.

You've listed several "pluses" that are motivating you to stay with her. But none of those pluses will outweigh a lot more sleepless nights if you don't arrive at a point where you can understand and trust her recommendations. So I urge you to talk with her in an office visit. If you don't feel reassured afterwards, then it's probably time to ask if you can switch to another vet in the practice. Or else sacrifice some of those "pluses" in order to find somebody else altogether.

Of course, these are just my own thoughts and you are free to totally disregard them. You don't even need to comment on them at all. But I hate to see you in such a state of ongoing stress over your relationship with this vet. :( And no matter what, I do really encourage you to call Dechra -- and to let us all know what you find out!

Marianne

[labblab]

Just wanted to come back and add that, like everybody else, I'm also scratching my head over Katie's recent ACTH results. But in checking back, her entire ACTH history has been very odd:


Original – Low Dose Dex Test – Pre – 9.36 Post 6 Hr – 3.68 Post 8 Hr – 15.7
Original ACTH Stim Test – Pre – 8.3 Post – 9.4

4/13 ACTH Stim Test – Pre – 11.1 Post 15.8

5/04 ACTH Stim Test - Pre – 4.3 Post 5.6

6/07 ACTH Stim Test - Pre 12.3 Post 15

I had forgotten that her diagnostic ACTH was so low, and that her first ACTH after starting trilostane was even higher than the diagnostic test. I have to say...these results are all REALLY screwy. :confused:

Don't have anything brilliant to say, but wanted to at least post the history of results for everybody to be able to mull over... Karen, I've forgotten, but has Katie ever had an abdominal ultrasound performed to actually visualize her adrenal glands?

Marianne

[zoesmom]

Hmmm . . . personally, I'd lose the female vet. But I understand how hard it is to ask to switch, and not knowing what the ramifications would be for the other one. Who knows what their clinic policy is. How many vets are there totall? Three? Maybe you could ask one of the receptionists how that would work out, since he seems to be more well-versed in trilostane. (And who knows, she might be happy to turn you over to him! :p:rolleyes:;))

Our clinic had about 10 vets and they didn't seem to care who you went to. Their schedules varied so much. You could ask for one specific or from among the others on duty. But since all the dogs' records were in the computer, regardless of what dog was being seen by whom, they could pull them up. I'd ask some of the staff how that might work. Sue

PS -
Zoe took so many meds and often had lots of fluctuation in her numbers. I could never pinpoint any specific drug interactions, but like you, I often had suspicions that there were some causing the ever-changing numbers. If not by a direct interaction, perhaps thru how well the stomach was absorbing the various meds on any particular day and combo, especially in regard to antibiotics (often simplicef) which weren't always in the mix.

[Mrs. J]

Thank you Marianne and Zoesmom!

I understand everything you are saying...

To answer your question, no ultrasound has been done to date.

After reading and thinking about this to death, believe me I have - I am wondering ALOT ...

The test with the good results - 5/4 - this is the ONLY test Katie has had that she was not on any sort of antibiotic (as I said in an earlier post AND the ONLY test that was run immediately after it was was taken. All the rest of the tests were done and the blood held for at least 24 hours or longer. That just seems so odd to me. Coincidence? Maybe, but interesting nonetheless.

We also know that we have found sooo many incompetences from these people its unbelievable. Starting from day one when they ran the wrong test, its been downhill from there.

They have given us wrong med, they have mislabeled our med, timing on the tests have been questionable, told techs that we need meds before we leave, then find out they never made any record of it and everyone gets mad at us for having to scramble before we leave to get it together...Katie had an eye that was bothering her the night of her last test on 6/7 and they refused to see Katie stating they were way too busy that I needed to schedule another visit for that, vet saw her for 2 seconds and said it wasnt an emergency, come back another day...I begged - Im talking BEGGED - the receptionist to have them see her, she said there was absolutely NO way no matter what that the doctor was too busy, it wasnt an emergency etc etc - then this weekend the doctor tells me in an email I should never have left she was going to see Katies eye...I said WHAT????? She was at a function with that same receptionist and apparently receptionist told her that I didnt want to wait...UMMM NO!!! OMG I thought I was going to lose it - I held it together and told her no way, we begged to be seen...My husband was there, he was livid also. Then the next day the receptionist called me and said it was a miscommunication... - ok then the tech tells me yesterday when she calls that the doctor tells her Im mad that my tests havent been run yet...well ya I am especially since I was told they had been and it was one day shy of a week!!! GRRRRRRR!

Zoesmom - I agree with what you are saying, and Im thinking of trying to get with this guy vet when we actually schedule an appointment for Katie to *see* the vet for any issues, checkups, etc. However, these techs and the receptionist honestly seem to be personal friends of the doctor we see now, this weekend, the main receptionist was out at a function with the vet as she was emailing me...the tech yesterday said she has worked for the doctor for many many years, and they are on first name basis and she then told me from this point on she would be the main liason between her and I...receptionist even told my husband yesterday when he was there that it didnt matter what Dechra recommended, that this woman was a vet, they are a company and we needed to listen to her not Dechra.

The first original tests and the first followup after starting lower does of Vetoryl - Katie had Clavamox in her system and also was given at the same time as Vetoryl. The good test - no antibiotics of any sort - just her anithistimine - this last test, Simpicef was and is in her system still. Oh the antihistime is Hydroxyzine and she has been on that since the day I entered that place, meaning for every single test.

[Mrs. J]

Just wanted to add:

Hubby and I talked last night and when we get this next test done in a couple of weeks, we are going to make sure its within the right time frame no matter what, we are going to insist the test is run immediately, and she should have NO antibiotics in her system by then, this antibiotic now has 4 days left. Unless something really bad happens and we cannot wait, no antibiotics until after testing.

Now after this next test, with all the above criteria met, if her numbers are still high, we will agree to go on the lysodren. However on OUR terms - meaning a cool down period. They can give us the meds immediately all they want, I will NOT start them for at least 3 to 4 weeks after she is off Vetoryl. (male vet told us last night 3 to 4 weeks some believed in/some did not)

Just for an FYI - the reason I do not really look forward to Lysodren is because Katie is such a fussy eater that loading is going to be scary for me and Im VERY concerned - I mean very concerned. If I dont have to go that route, I dont want to. Some days she loves food, other days, which is most of the time, she will not eat AT ALL. She has been like that since birth. Like mentioned many times, I hand feed her so she has no choice in the matter, with the lysodren, what am I going to do? The reason I have always hand fed her is she will get sick if she doesnt eat - and now because she needs food with the Vetoryl. So if I giver her the Lysodren, she will be on her own, will get sick - now will the sick AND not eating be from the lysodren ??? I think you get the picture. :(

[zoesmom]

Thank you Marianne and Zoesmom!

\They have given us wrong med, they have mislabeled our med, timing on the tests have been questionable, told techs that we need meds before we leave, then find out they never made any record of it and everyone gets mad at us for having to scramble before we leave to get it together...Katie had an eye that was bothering her the night of her last test on 6/7 and they refused to see Katie stating they were way too busy that I needed to schedule another visit for that, vet saw her for 2 seconds and said it wasnt an emergency, come back another day...I begged - Im talking BEGGED - the receptionist to have them see her, she said there was absolutely NO way no matter what that the doctor was too busy, it wasnt an emergency etc etc - then this weekend the doctor tells me in an email I should never have left she was going to see Katies eye...I said WHAT????? She was at a function with that same receptionist and apparently receptionist told her that I didnt want to wait...UMMM NO!!! OMG I thought I was going to lose it - I held it together and told her no way, we begged to be seen...My husband was there, he was livid also. Then the next day the receptionist called me and said it was a miscommunication... - ok then the tech tells me yesterday when she calls that the doctor tells her Im mad that my tests havent been run yet...well ya I am especially since I was told they had been and it was one day shy of a week!!! GRRRRRRR!

Only got a minute . . . but given all the above, I think I'd just start looking for a new vet altogether. That's no way to run a business OR a vet practice. Don't know where you live, but there's gotta be someplace else that respects its clients more than this place. After all, you're paying their salaries!!!!!!!!!!!!! GRRRRR is right.

One other thought . . . on the eating. My Zo was a mixed-up, messed up, backwards girl when it came to cushings and appetite. Her whole life, she was also a lousy eater, sometimes leaving her one meal (dinner) until several hours after feeding her. And then she never did finish anything. But here's what happened with Zo and perhaps this might happen with Katie. At first - after dx - when hernumbers started to drop, no real change in appetite.

But then once she finally got down into a decent range, her appetite began to increase. Over the ensuing months and years, it became obvious that her appetite correlated with her cortisol #'s. Only for her - Lower #'s meant better appetitie and higher (it crept up many times into the low teens) and and the appetite would go bye-bye again. So basically, she was the complete opposite of what most cush dogs do. But based solely on her appetite, I could almost always tell when her cortisol was good or not so good! Maybe once Katie's cortisol comes down to a therapeutic range, her appetite will increase . . . . . maybe, I say :rolleyes::p Sue

[Roxee's Dad]

Well Mrs J,
I haven't posted to yours and Katie's thread but have been trying to follow along. Thought I would try to write up a easy to follow summary but find it very difficult due to the so called miscommunication's, validity of the questionable test results. Wrong meds? Restarted thyroid meds without retesting? :eek: Not to mention the rudeness and lack of respect and compassion of your vet's office. :(

I have a dear love for all dogs but especially Lhasa's and Shih's and I am so sorry that you and Katie have to go through this. Just wanted to mention that I am in agreement with Sue and hope you can find a vet that is willing to work and discuss Katie's case and treatment options with you. There are many very good vets out there. :)

I along with a few others here have fired our vet's and have found one that is willing to discuss and take the time to provide the treatment that they are getting paid for not to mention a decent bedside manner. When treating cushing's, this is an absolute must to avoid any catastrophic results.

Hoping for the best for you and Little Katie. :)

[Mrs. J]

Thank you so very much everyone, this is such a rough time and you all being there means so much! :)

John - Just to elaborate a bit on the *wrong med* thing - the vet had prescribed Simplicef for Katies neck via email - when my husband got to the office to pick it up, they gave him Clavamox instead. He brought it home and gave Katie a pill of it. I wasnt home at the time and didnt know any of this until I got home. I cannot blame my husband because all I asked him to do was go to the vet and get the antibiotic, I never told him what it was. I never dreamed in a million years they would give him the wrong stuff, it never even crossed my mind!

It all worked out since she has been on Clavamox many times and no reactions or anything, but still!!!! GRRRRRR...

As far as restarting the thyroid med without retesting...the tech claims she did retest the thyroid, claims it was running during out first phone call. By the time of our 3rd call (or something like that), she claimed Katie needed to go back on the med. I did start Katie last night on the .1 . Now if that blood is tainted in some way then this result is messed up too, and believe me, I struggled with that. I do know that if a dog is overmedicated with thyroid meds, it can make them drink excessively, so if Katie starts drinking heavily again, Im concerned I may not know if its the thyroid or the Cushings!!! (at that point I will stop the thyroid to make sure I guess, not like I can call the doctor or anything...)

Oh and I forgot to add that the tech was adamant yesterday with me on the phone that Katie NEVER had a test on 5/4 since the results were not in the computer... the 5/4 test were the good results. After me INSISTING over and over and over again that I knew what I was talking about, she said well maybe its on the hard copy, and that she would check. Nothing more was ever said about it, so I assume she found it. GRRRRRRRRR...

Theres more, but you get the gist...this is just making me more angry even thinking about it.

[Mrs. J]

Almost forgot:

What is everyones opinion on the blood sitting for almost a week after the test? Would that affect anything? Isnt it odd that the only test that was low so far was the one that DID NOT sit?

Does anyone think that the stuff that is injected into Katie is outdated and that could cause something like this? (I mean its not like they would EVER tell me but still...)

[StarDeb55]

Mrs. J, I'm the lab tech that may have been mentioned to you. When it comes to Katie's blood sample sitting for a week there are 2 questions you need to ask. Was the blood spun down (centrifuged) & the serum ( water part of the blood) separated from the actual red blood cells. The next question is was the serum sample frozen? If these 2 things were done, & Katie's test was done from the frozen sample, this should not be a problem. If these 2 things weren't done, you have totally invalid test results, IMO, & I would insist that the next test be done at a discount at a minimum, preferably no charge, as this is a huge screwup by the office.

Debbie

[Mrs. J]

Thank you, good information! :)

I will try and ask, but in all honesty, do you really think they would admit it to me? I highly doubt it... :( I sure would LOVE to know...

The tech told me shes the only one who runs the tests, that she was out sick last week so thats why the test wasnt run for a week, also when Katies numbers were low, my vet was on duty that night and I was home only about 3 hours when she emailed me that the results were good...Im thinking she ran them herself, maybe that would account for the good numbers? Make sense?

I was typing this, got half way done and then left to take care of Katie and I made a terrible terrible error - hope someone is out there to give me some advice - I dont know what I was thinking! Katies simplicef is due 1X daily - I gave it to her 12 hours ago - I just gave her another pill by accident - probably out of habit because it was her pill time!!

OMG help!!!

[AlisonandMia]

I'm pretty sure it will be fine with the Simplicef. What dose are the tablets and how much does Katie weigh again.

Often when an antibiotic is being used to treat a really aggressive infection really high doses will be used, especially initially so there is every chance that the dose that Katie was on was pretty moderate.

I think the worst that you will see is maybe some diarrhea. Might be a good idea to switch to giving it in the evenings now - ie miss the morning dose and then give her her next dose tomorrow night.

Try not to worry - these things happen! (I reckon I've done worse - can't recall details as I've blotted it out - la! la! la!;):p)

Alison

[Mrs. J]

Its a once a day med, she had it 12 hours ago - well 11 1/2 hours to be exact. Had to move her pill time slightly because of scheduling. Dosage is 100mg. She has 3 pills left, yes I will give it to her nights now.

Great timing on the diarrhea. Have to go out for awhile tomorrow afternoon. Ugh!!!

Thank you for your quick reponse, Im freaking out here :(

Katie weighs 27 1/2 pounds. If it matters, she had her other pills also at the same time and with food.

[AlisonandMia]

OK - just located the prescribing info on Simplicef (http://www.simplicef.com/PDF/Simplicef/simplicef_pre_info.pdf). Here's an excerpt:


ANIMAL SAFETY
In target animal safety studies, cefpodoxime was well tolerated at exaggerated
daily oral doses of 100 mg/kg/day (10 times the maximum label dose) for 13 weeks
in adult dogs and for 28 days in puppies (18-23 days of age). Therefore, once daily
administration of cefpodoxime oral tablets at the maximum labeled dose of 10 mg/kg
for up to 28 days was shown to be safe in adult dogs and puppies.


You will have given her a one-off dose of about 18mg/kg which is way under what was given there - so it doesn't sound like there is anything to worry about at all. They don't even mention diarrhea!

Alison

[Mrs. J]

Ok, my brain isnt functioning - what does all that mean ? :D Her mg is 100 so that is an exaggerated dose? I must be missing something, sorry brain fog right now.

[AlisonandMia]

You've given her a biggish dose (18mg/kg which is what 2 X 100mg pills in a 24 hour period is for a dog her size (12.5kg). In the safety trials they gave them 100mg/kg per day for 13 weeks - many, many times more what Katie has had - with no ill effects. (That would be the equivalent of giving Katie about 9 pills per day for 13 weeks.)

This means that it is very safe in overdose (even much, much bigger doses than Katie has had) and you almost undoubtedly have absolutely nothing to worry about. Sounds like you could do with some sleep!:)

Alison

[Mrs. J]

Thank you once again Alison!!!

[zoesmom]

also when Katies numbers were low, my vet was on duty that night and I was home only about 3 hours when she emailed me that the results were good...Im thinking she ran them herself, maybe that would account for the good numbers? Make sense?



Well, this is also a little confusing to me. I assume you are talking about the 5/4 ACTH test - when the numbers were the best. As far as I know, the ACTH sample must be sent out to a lab for testing. I've never heard of a vet clinic processing that test right in-house. (Has anybody else ever heard of that possibility?) And I think that's the same one they are telling you they can't find a record of? Are you absolutely sure she e-mailed those results within 3 hours. That just seems very odd and makes me wonder what the heck is going on there. Unless, perchance, the lab is right in their immediate neighborhood . . . .and picked up the sample right away . . . .and the lab wasn't all that busy that day!!!! Strange. You've got the e-mail tho' so that should verify the date AND the numbers. Did I misread anything?? Sue

[Harley PoMMom]

There is an in house snap cortisol test:


SNAP® Cortisol Test

•Testing in-house during patient visits allows you to make decisions immediately, saving your clients anxiety and saving you time.

SNAP Cortisol Tests allow you to measure cortisol concentrations using your in-house laboratory, providing the convenience of timely results and the ability to initiate or modify therapy immediately.

http://www.idexx.com.au/animalhealth/analysers/snapreader/testmenu/cortisol/benefits.jsp

[zoesmom]

Thanks, Lori. I'd never heard of the snap test for cortisol. Is it as accurate? I figured maybe the emergency clinics could do something like that, but didn't realize that regular clinics might also. Still learning! :o;) Sue

[Harley PoMMom]

I have no idea of its accuracy, I can not find any info about that...One would think it would be listed with the snap cortisol test info on the website? but nooo!

Well, It does say this and shows a chart:


The data presented show excellent clinical agreement between serum cortisol concentrations measured by the SNAP Cortisol Test and radioimmunoassay (RIA). An r-value of 0.97 indicates excellent overall agreement between cortisol concentrations measured by the SNAP test and cortisol concentrations measured by RIA.

[Harley PoMMom]

Still learning! :o;) Sue
So am I!!! ;):D

Love and hugs,
Lori