Here comes Harry......

[HarryHo]

Harry is an 11 year old chocolate lab who was diagnosed with (pituitary) Cushing's over 1 1/2 years ago, he had an ultrasound (forgot why) when they noticed enlarged adrenals. His symptoms were very mild in the beginning. I only noticed the excessive thirst. Blood work was done and the first ACTH stim. In January, thirst was increasing as was hunger and urine output - especially at night. This ACTH stim was more positive - I apologize, I do not have the numbers at this time - and my vet believed it was time to begin treatment. Having seen good results with other patients on Vetoryl, she started him on only 60mg in the morning. No side effects were seen but no huge improvement of symptoms either. we did another ACTH stim and he was nearly at the level she wanted him to be at (2.something?) so she added 30mg in the evening. My poor love has legs like noodles! He still has problems of thirst - he will call me to his water dish to refill and will drink the entire bowl at one time. He has had a few accidents in the house, fortunately he pees in the tub. His hunger is a pain. All of that I can deal with. The hind weakness breaks my heart. I understand that an inflammatory process may have been masked by the overproduction of cortisol, but something doesn't make sense. It's getting worse. His panting is ok but he does have the beginnings of laryngeal paralysis diagnosed prior to Cushing's. Our last visit to the vet was last week. She moved his legs, checked his hips. Said hips were a bit sensitive. Her suggestions were as follows: Switch to Lysodren after 2 weeks off Vetoryl; Increase Vetoryl to 60/60; and/or give him tramadol for pain. My thought was take him off Vetoryl since he was better before the toxins entered his body. She believes that his symptoms may worsen, not to mention that he needs some sort of treatment. She also said that if I decided to try that - 2 weeks off wouldn't hurt him and we could put him right back on should I choose to do that. I need advice for those who have had similar experiences please!

[HarryHo]

Also, perhaps the worsening laryngeal paralysis is due to cushing's??

[goldengirl88]

Hello and welcome to the forum. Several things you said I wanted to comment on from my own experience. The hind leg weakness can come from the muscle wasting of Cushings. Keep him walking to save what muscle he has, if you can find cold laser therapy where you live it will help and is not that expensive. As far as the pharyngeal paralysis, you need to get your dog on Adequan shots. My dog developed tracheal problems from the Cushings, and has had breathing issues. The Adequan made a big difference and will help with your dogs joints etc. which older dogs need. You get a series of 8 shots, by getting 2 a week. Then you get a booster every 4 weeks from then on. It has really helped my Tipper. I know all this is scary, hang in there it will get easier. Try to keep a doggie diary, you will need it to refer to. I write in mine first thing in the morning. I am unclear as to why you switched from Vetoryl to Lysodren?? Also could you post all the tests your dog has had to determine Cushings, and just put the abnormal numbers? It will get help for you from the others. Blessings
Patti

[HarryHo]

Thank you so much for commenting. We have not yet switched to Lysodren. It's just an option because I feel that his symptoms are getting worse on Vetoryl. It is Sunday, but will post my dogs lab results as soon as I can get them from the Vet. Absolutely looking in to the cold laser therapy! I do walk him 2 blocks every day, always have. A journal is a great idea as my memories are shakey.... I can't quite remember why we had an ultrasound to begin with! I think it was because his liver enzymes were off. He is on Denamarin and they have gotten back to normal.

[Roxee's Dad]

Hi and welcome to you and Harry,

Not knowing what the results of his ACTH test numbers are, it's hard to say if his cushings is really under control.

A cushings dog should be around 1.45 up to about 5 ish, really depends on where that dog feels the best.

Have diabetes or thyroid issues been ruled out? It is very possible that Harry could have more than one condition. Diabetes will also cause excessive thirst and urination (PU/PD)

I see Harry has and Ultrasound and adrenals are enlarged, probably because they are working hard to produce the cortisol which makes sense.

I am guessing that Harry is about 60 pounds?
He is getting 60 mg of Vetoryl in the morning.
and 30 mg of vetoryl in the evening.

When the ACTH test was performed, was it within 4 hours of Harry ingesting the Vetoryl (Trilostane) ? And did Harry have a meal with his dosage? A meal is necessary to completely absorb the Trilo into his system.

Looking forward to seeing his latest ACTH test results.

[HarryHo]

We are scheduled for thyroid testing. Harry is 80#. The ACTH test was done within 5 hours of administering am dose and NO FOOD I was told each time until after the test. I have undying faith in my vet but always just a bit more curious.......
The ultrasound was performed before Cushing's was even a thought. The enlarged adrenals is what prompted further testing. If I'm not mistaken, his last ACTH was around 2.3? She did suggest perhaps increasing his evening dose to 60mg. And she mentioned his legs could be neurological, but unknown unless confirmed with MRI or CT, which I cannot proceed with at this point.

[Roxee's Dad]

The ACTH test was done within 5 hours of administering am dose and NO FOOD

This is a problem, The Trilo most probably has not been efficiently absorbed into his system. I would null and void any results from the ACTH testing until proper protocol has been followed. The ACTH numbers are pretty useless at this point and at the very least suspect.

http://www.dechra-us.com/Cushings-Syndrome/Veterinarians/Prescribing-VETORYL-1.aspx


As per Vetoryl: VETORYL Capsules should be administered orally once daily in the morning with food. Administration with food will significantly increase the rate and extent of absorption of VETORYL

[goldengirl88]

You have been told the complete wrong information. You do not fast before an ACTH test once they are on the Vetoryl. Is that what you are saying, or do you mean the very first testing done. After a dog starts on Vetoryl it is important they eat and take the Vetoryl before doing the ACTH. If not they can be overdosed. The Vetoryl is fat soluble so it must have some fat in the meal to absorb better. I think your dog may have started on too high a dose to start out with and is feeling the effects. I don't think you have given the Vetoryl long enough to see if it works well. I would try to start on a lower dose and let your dogs body adjust to the drug. Right off the bat you are starting your dog on 90mg. What is his weight? The dosage is 1mg per lb, if he weighs 60 lbs he should not have started on 90mg. Please call Dechra they have people there to help you with this. You aren't following proper protocol and that is why everything is invalid. Dechra is 866-933-2472 please start a file on your dog there. I think you need to get the procedure down and start all over. Always ask for copies of any tests the vet does. Also you cannot go straight into using Lysodren from Vetoryl. Please ask any questions and we will be very glad to help you. Blessings
Patti

[HarryHo]

Harry is 80 lbs. We began at 60mg, had an ACTH stim, increased it with 30mg additional at night because symptoms were not improving. ACTH stim is at maybe 2.3 (I will know better when I get copies) right now but symptoms still have not improved. He does not have any of the side effect symptoms - just Cushing's symptoms.

[Roxee's Dad]

2.3 is a pretty good number and maybe he needs to go a bit lower, every dog is different. I wouldn't let it drop below 1.5 though. Below 1.5 may mean a trip to the ER for fluids.

But.... as recommended by the manufacturer of Vetoryl, use the medication with food to get much better absorption of the trilo in his system. Since he wasn't being fed with the medication, it wasn't giving it's full effect, so that extra 30 may just put him too low. Keep a close eye on him and watch for symptoms of cortisol going dangerously low.

[molly muffin]

Something seems really strange here with the symptoms not being controlled at at ACTH level of 2.5 and a dose increase being given.

Dechra is quite definite that an ACTH should be done, after giving the morning dose with a bit of food (no fasting for testing after starting vetroyl, as test results will not be accurate) and that you don't want to go lower than 1.45. At 2.5 most vets wouldn't be looking to increase. What they might do is to split and do a 30mg am and 30mg pm. But I am a bit suspicious that the result is correct based on what you have said about the testing. (yours would not be the first vet to get that one wrong, and Dechra is quite willing to tell your vet how to do the test correctly)

I would retest for thyroid and for diabetes and do a kidney profile panel. As far as switching to lysodren, it is difficult to say if this is the right move without adequate ACTH profile.

Some food for thought and things to discuss with your vet.

Sharlene and Molly Muffin

[addy]

Something does not seem right to me either. At 2.3 with an ACTH test correctly done, I could see the dose split to 30 mgs twice a day as Sharelene said to see if symptoms get better and side effects lessen, but not an increase.

If this were me I would insist on the vet doing the proper ACTH test on her dime since she told you not to give food to see where your dog's cortisol is before anything else.

Not all dogs get immediate control of symptoms and sometimes they can feel pretty yucky if the cortisol drops really fast which, Trilostane/Vetoryl certainly can do. It can take some tweaking to get the dose right where the pups feels best.


http://www.dechra-us.com/Files/dechraUSA/downloads/Case%20Studies/Clinicians%20Brief-trilostane.pdf


According to this at the 30 day mark if test was done properly with food 4-6 hours after dose, 2.5 post with symptoms present, dose should have been split in two not increased.

You want to make sure he also is not too low now and increased drinking and weak legs could be a sign of that as well.

[Harley PoMMom]

The ACTH test was done within 5 hours of administering am dose and NO FOOD I was told each time until after the test.... If I'm not mistaken, his last ACTH was around 2.3?

I am very concerned for your boy. It is extremely important that proper protocols be followed when performing an ACTH stimulation test.

Trilostane/Vetoryl has to be given with food to be properly absorbed.

This is an excerpt from Dr Peterson who is a renown Cushing's expert:
With trilostane, it’s extremely important to give the morning medication with food, and then start the ACTH stimulation test 3 to 4 hours later.

Fasting these dogs on the morning in which the ACTH stimulation test is scheduled should be avoided since it invalidates the test results. The full article can be found here: What's the Best Protocol for ACTH Stimulation Testing in Dogs and Cats? (http://endocrinevet.blogspot.com/2011/03/whats-best-protocol-for-acth.html)

Hugs, Lori

[HarryHo]

Thank you all for your input. I have sent a message on the Vechtra website also. I will speak to my vet tomorrow.

[HarryHo]

I read the insert. Nowhere does it say that an ACTH should be done after the medicine is given with food. Yes, it is true that Vetoryl is to be given with food - and we have done exactly that every day - but the ACTH was performed within the guidelines of 5-6 hours post dosage, nothing about food for the test. Also, while every dog is different, the chart on the insert says 80lbs is safe at 180mg. He's only taking 90mg total per day. I will post after I speak with the Vet (asking her to do any bloodwork necessary at this point - electrolytes, thyroid, sugar) and when Vechtra gets back to me. Stay tuned!

[molly muffin]

Dechra unfortunately has not updated their insert since introduction to the US, 10? years ago now.

I would suggest you simply give their 888 number a call in the morning and ask them about the protocols for ACTH testing, fast or not.

You aren't the first member that has been told to Fast for an ACTH while on vetroyl. This was told to another member on here in April this year and we recommended that they call Dechra also:


Marianne,
THANK YOU!!!!! I followed your device and called Dechra. They were very helpful. Not only were my all of my questions answered, they were also explained. They told me that Vetroyl was fairly new in the United States and a lot of vets are not familiar with it's protocol.

1. Trilostane must be administered with food for proper absorption.
2. ATCH testing - No fast- Meal with medication - a smaller meal is warranted if the animal tends to get carsick. Test must be
started within a 4-6 hours, but doesn't have to be completed by
then.
Vets often want to do several tests at once therefore requiring a
Fast. In that case it is advisable to do the ACTH test at a different time.
3. Benadryl - Benadryl shouldn't in any way affect the ACTH test results.

So there is your verification once more! I wish my vet would call!
There are other Cush parents who are going to be getting the same instructions that I was given and won't know enough to look further.

Kathy and Buddy
http://www.k9cushings.com/forum/showpost.php?p=99112&postcount=35

Which is why we suggest that you call Dechra yourself, directly to get the correct information.

With over 2000 members with cushings pups, we've seen this many times.

Sharlene and Molly Muffin

[Squirt's Mom]

Vetoryl is the "new kid on the block" in canine cushing's treatments and things are changing as the drug is used more. Dechra has not changed their product insert to reflect the new studies on their drug as of yet and may not until more is known so they are not spending their quarterly profits too often on reprints. ;)

Call Dechra or have your vet call Dechra.

Another point your vet is not quite correct on is the 2 week washout between Vetoryl and Lysodren. That requires a minimum of 30 days - and that IS in their literature. ;)

[goldengirl88]

Hi:
Everyone on here is trying to help you and the people on here are more educated than most vets about this disease and treatment of it. Please listen to what the panel is telling you to do. You can call Dr. Peterson's office he is a world famous endocrinologist in New York. He has the only clinic in the world for this. Ask them if the dog is to be fed before an ACTH test. I have used Dr. Peterson before for my Tipper. He absolutely said the dog must be fed before an ACTH test as the dog can be overdosed if not. Please call and check it out if you do not believe us. We would never give you misinformation. We are all here to help you and your baby, but I am getting a feeling you are not wanting to trust us. My dog would not be alive if it were not for me finding this forum, and I would never just say that, it is true. Please have faith in these people as they are a godsend. Hope all goes well. Blessings
Patti

[lulusmom]

Hi and a belated welcome to you and Harry.

I have shared my life with three cushdogs, all of whom treated with Trilostane (Vetoryl) and learned long ago that gp vets are famous for prescribing drugs before they've educated themselves on every aspect of it. Whenever I hear that a vet has told a client to fast their dog before an acth stimulation test for purposes of monitoring treatment, I cringe. My heart sincerely goes out to every client whose cushdog is being treated by that vet because ACTH stimulation tests are expensive and it is irresponsible to stress out a dog unnecessarily and take a client's hard earned money for test results that are only good for practicing office basketball with the trash can. She shoots, she scores and you just flushed a few hundred bucks down the toilet.

Other members have given you some good reference material to read and/or print out for your vet. If I were you, I'd be asking for some free stim tests going forward to make up for the ones your vet invalidated. Can you let us know if it was the vet or a vet tech/front desk person who gave you the fasting instruction? We've seen many, many members who received these erroneous instructions from someone other than the vet, so your broaching the subject with your vet will hopefully prevent 1) the very real possibility of Harry or another cushdog treated by that practice being overdosed because a dose increase was prescribed based on an inaccurate acth stim test result and 2) clients and their dogs will be receiving proper instruction and proper care for the hard earned money they put out for these tests and vet care in general. There really is no excuse.

You can find an online version of the Dechra U.S. product insert here: http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

If Harry's last post stimulated cortisol number was 2 something ug/dl and he was fasted, I'd be very concerned as that number would have been lower had Vetoryl been given with food. You are very fortunate that Harry hasn't crashed. I don't see any treatment timelines but since he was diagnosed in January, I would think Harry has had at least three or four stim tests after initiating treatment, right? I'd normally request that you round up all of the stim tests that were done so far and post the results here but because you fasted Harry for all of them, they aren't going to be of much use. It would, however, be great if you could share the results of the stim tests that were done prior to your vet increasing the dose of switching to twice daily dosing.

I switched my dogs from Trilostane to Lysodren and they did not make the switch until they were completely symptomatic again and their post acth stimulated cortisol was above normal again. One the switched after 30 days and the other didn't see return of symptoms for over two months. I can tell you that it is very rare for a dog on twice daily dosing, for as long as Harry has been on Vetoryl, with a post stimulated cortisol level of 2 something, to have unresolved symptoms. It is known that not all dogs will see improvement in drinking and peeing but most other symptoms do resolve within three to six months. It is also concerning that a fasted dog on twice daily dosing has post stimulated cortisol of 2 something if properly administered with food, that number would be lower. At 2 something, there is very little wiggle room between acceptable and too low so it makes me wonder if Harry's weakness may be due to inadequate level of cortisol. :confused:

If Harry were my dog, I absolutely would not switch to Lysodren without determining the true efficacy of Vetoryl by way of an acth stimulation test administered according to proper protocol. If finances allowed, I'd probably also ask for a referral to an internal medicine specialist. Your precious boy has a lot going on and internal medicine specialists deal with cushing's and other endocrine disorders every day. My dogs treated with an IMS and I was never the only pet owner in the waiting room waiting for the acth stim test to be done. They deal it with it day in and day out and tjey may cost more but sometimes they save you money in the long run.....and you usually get what you pay for. I spent thousands trying to figure out what was wrong with my first cushdog and it wasn't until I met an IMS who saw my noncushdog for an emergency surgery that I heard the word Cushing's for the first time. I had my little Lulu with me and he took one look and asked me if she had cushing's. That was the first time I looked like a deer in headlights. The second time was when he diagnosed her. :D I loved my gp vet and trusted him implicitly to know what was best for my dogs. Unfortunately my dog paid the price for my placing blind faith in my gp vet; however, I at least had an excuse for never having heard of Cushing's, never having seen what it looks like in a dog or even how to spell it. There was no excuse for my gp vet, who had been in practice for decades. It boggles the mind.....how do you practice that long and stay so ignorant? That's not to say your vet is ignorant, I'm just saying that not all vets are created equal and cushing's is one canine disease that brings that fact to light more often than not.

Looking forward to hearing more about your precious Harry as well as hearing all about any response you get from Dechra. They are usually very good about getting back to members right away.

Glynda

[HarryHo]

Thank you all. I am not trying to be contrary, I am simply trying to do best by my dog. I have not yet heard from Vechtra, and work was too hectic to get test results.... but they will be forthcoming. I must admit I'm tempted to take him off completely and start from scratch, after he becomes cushionoid again. Or at least cutting down to just the 60mg in the am. I am not even entertaining the thought of Lysodren at this time. He has no overdosing symptoms such as lethargy, diarrhea, vomiting. Just polydypsia, polyuria and weak legs. Was gone over 10 hours today and NO accidents either. This is very scary and I'm afraid to trust anyone.... but am extremely grateful for all of the references and support you are all extending. And so my research continues!

[molly muffin]

Awww, yes I agree, it is scary, especially when you are confronted with trying to work all this out. I think everyone of us came here scared to death for our dogs and worried about what to do. The one thing that will help you more than anything else is to become as knowledgable as you can about cushings. The treatments, the drugs, the testing, every thing. What the experts say and recommend and what has worked for others. We have literally tons of threads here and have seen most options used. So, reading will give you some ideas.

If not accidents and a 10 hour day, then that is pretty good. I would consider doing the split dose, to of 30/30, am and pm. To keep the cortisol leveled out. We have some members who do that and are doing like 40/20, etc Whatever works best is what you'll want to stick to. If going to low unmasks arthritis issues, then don't go as low and consider the injections, they can be very helpful for both joints and for the larynx issues.

I've found that the group who monitors is the emails are not the same as the one who answers the phone and will even get a Dechra vet if needed to look over results. You'll get a faster response to a direct call and they will give you a case number, so that any time you want to call in and check on something, they can pull your file right away.
Not a bad option and one that is only available to members in the USA. (we all wish we had that kind of support from Dechra).

So, you have some things to think about and to read. I'm so glad that things went well today.

Sharlene and Molly Muffin

[HarryHo]

That was a very sweet message Sharlene and Molly Muffin, truly appreciated. I just got off of the phone with the emergency vet from Vechtra and was told that a fasting ACTH 4-6 post medicating is fine. They do the test 4-6 hours later because that is when med is at it's peak in the system. We discussed symptoms, latest level, and my concerns. They concur with my vet that the leg weakness could very well be unrelated to medication and cushing's.
I am happy to now have a case # and places to turn! Love coming on here and reading about others experiences and all of the advice being offered. Absolutely going to ask about that injection also. Thank you thank you thank you. On to read more of your stories!

[lulusmom]

I just got off of the phone with the emergency vet from Vechtra and was told that a fasting ACTH 4-6 post medicating is fine.

I know that I am not the only member who is dumbfounded reading this because it's simply not true and to fast a dog prior to an acth stimulation test can place a dog at great risk of overdose. I highly recommend that this Dechra vet read some of the continuing education material his/her employer provides the veterinary community to give them a better understanding of the drug, how to prescribe an appropriate dose and how to correctly monitor treatment. One of Dechra's contributing expert, who routinely lectures on the subject, is renown endocrine specialist, Dr. Mark Peterson. Dr. Peterson is very clear and stresses in his lectures and his blogs that Vetoryl must be given with food prior to the acth stimulation test. Others may have already provided a citation to Dr. Peterson's blog on this issue but I'm going to provide it again below to provide members with proof that the vet you spoke with gave you some really bad information. For ready reference, I've also provided the most relevant part of that blog quoted below.


Remember that the ACTH stimulation test is the most useful test for monitoring dogs being treated with trilostane (Vetoryl) or mitotane (Lysodren) see my blog entitled, Diagnosing Cushing's disease: Should the ACTH stimulation test ever be used? Both medications are fat-soluble drugs and must be given at time of meals, or the drugs will not be well absorbed.

http://endocrinevet.blogspot.com/2011/03/whats-best-protocol-for-acth.html


With trilostane, it’s extremely important to give the morning medication with food, and then start the ACTH stimulation test 3 to 4 hours later.

Fasting these dogs on the morning in which the ACTH stimulation test is scheduled should be avoided since it invalidates the test results.

When a dog ‘s food is withheld, the absorption of trilostane from the gastrointestinal tract is decreased. This leads to low circulating levels of trilostane, resulting in little to no inhibition of adrenocortical synthesis. Therefore, serum cortisol values will higher when the drug is given in a fasted state than when it is given with food.

The higher basal or ACTH-stimulated cortisol results could prompt one to unnecessarily increase the daily trilostane dose. That misjudgment may lead to drug overdosage, with the sequelae of hypoadrenocorticism and adrenal necrosis in some dogs.

I'm also including a url to Dechra's own Frequently Asked Questions, two of which are:


Q: How do I give VETORYL Capsules to my dog?
A: You should give your dog VETORYL Capsules with a meal in the morning. Food improves the absorption of VETORYL Capsules. Morning dosing makes it more convenient to schedule the monitoring tests that need to take place four to six hours after dosing.

Q: What do I do on the day of monitoring?
A: Give the prescribed dose of VETORYL Capsules at the regular time with a small amount of food.

http://www.dechra-us.com/Files/dechraUSA/downloads/Vetoryl_FAQs.pdf

Again, dogs treating with Vetoryl (Trilostane) should not be fasted before an acth stimulation test for purposes of monitoring treatment.

[LtlBtyRam]

I am just going to say welcome to these forums. Way to go for being your dog's voice. The folks around here are PAWSOME. I know it can be overwhelming and scary.
Angela