New member; dog recently diagnosed with cushings

[jorts]

Hello all,

My healthy almost 8 year old black lab/pitbull/boxer mix dog "Bruno" was recently diagnosed with cushings, however, so far i am not happy with our vet and wanted some of your opinions. a little back story: my wife and I moved to New Orleans from NJ about 2 month ago. we had no local vet.

We had noticed Bruno was panting alot for no reason; a friend suggested we get him checked out. he needed heartworm and flea and tick anyways so we took him in and the vet did cushings test. the vet called and said he did have kushings (Pitutiatry-dependant) and ordered us the meds.

we trusted the vet and started the meds. the meds the vet gave us were Trilstane from a compounding pharmacy. the vet instructed us to give 2 65mg capsules twice a day with food. so 4 total pills per day, total 260mg. i have good friend that is a vet medicine rep who indicated that that amount of Trilstane is too much for my dog.

Bruno weighs 79lbs.

i researched it and also found that the recommended dose of Trilstane is 120mg/day for dogs weighing 4-88lbs!

we went back yesterday to have Bruno’s 14 day test to make sure the meds were working. the vet called today and indicated that the results from the test indicated that the meds were working (the dose was correct) and we should keep him on them. when i asked the vet why we were giving Bruno 260mg per day when the meds call for 120mg per day he put me on hold, then came back on and said "we can change it to 1 dose per day no problem (only 2 pills in the morning 130mg total), Bruno will be fine!" so i asked will that change the results of the testing you did today if you change the meds by 50% and he said not to worry, that we can retest if i wanted to but it is not necessary and we won’t need another checkup for 6months-1 year as long as we keep him on the meds.

the vet is also saying he thinks my dog has a thyroid problem and we should do another $130 test.

i had the vet fax me all the test results he had done so far. i am not a vet so it is hard to read and understand these and know what info is important what is isnt....but here is what see:
Dexamthansone Suppression Test completed on 4/2/13:
pre dexamthansone: 12.8 1.0-6.0 ug/dL

LASERCyte Test completed on 4/12
everything normal
VetTest completed on 4/12
everything normal

ACTH Simulation Test: completed on 4/25 (after 14 days on Trilstane):
PRE-ACTH Cortisol: 3.6 ug/dL
POST-ACTH Cortisol: 4.4ug/dL

these pills are expensive. the tests are expensive. i have spent over $600 this month already on the tests and 2.5 weeks worth of meds!.

i don’t want to come off as cheap ( i will do what i need to do for my dog) but i need your advice. My wife and I have decided to go to a new vet. the vet hasn't been very straightforward helpful.

any help would be greatly appreciated!

[Squirt's Mom]

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[Budsters Mom]

Hello to you and Bruno,:)

I am so glad you found us.:D
Many others will be dropping in shortly to say hello and welcome also.
You have come to the right place! There are many K9Cushings angels to help answer your questions and stay with you every step of the way. They love details, test results, any information you can get your hands on. The more the better. The more they know, the more they will be able help you and Bruno. So Please keep talking to us:)

Kathy and Buddy:cool:

[Harley PoMMom]

Hi and welcome to you and Bruno,

I believe that you should RUN, as fast as you can, away from this vet!! You are correct in that the dosage of Trilostane the vet Rx'd was indeed way too high.

Dechra, the makers of Vetoryl, which contain the active ingredient Trilostane, have verbally recommended that dogs start out at the lower end of their dosage scale which is 1 mg per pound of a dog's weight. For Bruno's weight of 79 lbs, he should of started out at no more that 80 mg once a day.

I am really concerned with the dosage that Bruno is taking and if he shows any adverse effects, please stop the Trilostane. Did your vet give you any prednisone to have on hand in case of an emergency? Ill effects of too much Trilostane are but not limited to: vomiting, diarrhea, lethargy, not eating, and the dog just not acting them self.

Here 's a handy link that has a lot of info regarding Trilostane/Vetoryl: Trilostane/Vetoryl Information and Resources (http://www.k9cushings.com/forum/showthread.php?t=185)

Cushing's is one of the most difficult diseases to get a confirmed diagnosis for because not one test is 100% accurate at diagnosing Cushing's and other non-adrenal illnesses can create false positive results on all tests for Cushing's.

Strong symptoms make up a huge part of the diagnose of Cushing's, could you tell us what other symptoms besides panting does Bruno display? Dog's with Cushing's disease usually have a ravenous appetite, pee lakes and drink buckets of water, I didn't see any of those symptoms mentioned.

Please know we will help in any way we can so do not hesitate to ask any and all questions.

Love and hugs,
Lori

[molly muffin]

Hello and welcome from me too.

I completely agree with what Lori said. I think your vet is out to lunch, clueless. I thought my vet was correct when she recommended 30mg vetoryl for a 19lb dog. My IMS said, no way, that was too high and that current recommendations and studies all say to start much lower. You move up if you need to, but the idea is to not create a crisis situation.

We've seen large dogs end up on much lower doses and small dogs end up on higher doses, so ever dog is different and has different sensitivities. There is no way to know that going into treatment and only discovered as treatment moves forward. So, that is why I find the dosage your vet gave, to be very scary. Just keep an eye out for any lethargy, vomiting, diarrhea, refusal to eat, etc. These are signs of an overdose. I would personally probably cut the dosage back quite a bit.

Cortisol can continue to drop even past the first 14 days, or even 30 days. Right now, where Bruno is at, you don't want him to continue to drop.

I'm glad you asked your vet questions, I'm not really a fan of the answers. If you have any questions about usage of the drug, you can call Dechra yourself too. Sometimes I understand that especially in the US they will speak with an owner that is on the medication. Several of our members have done so. You can even get a patient number to give to your vet so they can communicate specifically about Bruno. That is one possibility. Another possibility is to see an IMS or a different vet. Screen any possible vet just as you would do for anything else. How many dogs have you treated for Cushings, how much experience do you have vetoryl or do you use lysodren, what has been the outcomes of treatment.

As Lori said, we will help any way we can and ask anything you want.

Sharlene and Molly Muffin

[juliwilliams]

I'm in no way an expert, but I have to interject here. I was in your shoes about a month ago. Get a new vet now!! For the sake of you dog and your wallet, go see someone else. I spent 5 months with a vet who did not know what he was doing and my dog has been through far too much because of it. He got way too much vetoryl and had a bad reaction. My guy also has diabetes so we are now seeing an internal medicine specialist. My old vet said he knew about treating cushings and has treated many dogs with cushings. But he kept increasing the dose without testing and then had me give him more medicine after his first bad reaction. The people here convinced me it was time to see a new vet, and I'm so glad I did. Who knows what could have happened!

Now that we're seeing a specialist, we're pretty much starting over with the cushings. Which means starting over with all the testing. All the money I spent trying to get Cooper regulated on the vetoryl was wasted.

I say start calling vets, find out how many dogs with cushings they've treated, and maybe even ask how often they recommend testing to get an idea if they have a clue what they're talking about.

[molly muffin]

I say start calling vets, find out how many dogs with cushings they've treated, and maybe even ask how often they recommend testing to get an idea if they have a clue what they're talking about.

Good idea! Testing should be 10 - 14 days after first dosage, 30 days after first dosage. Tests should be 4 - 6 hours after morning dose. Medicine should be given with food for proper absorption. :)

The more you know, the better at keeping the vets on the right path too.

Sharlene and Molly Muffin

[goldengirl88]

Hello;
Welcome and sorry you are having problems with your dear Bruno. I learned from experience, and lengthy talks with Dechra that you need to err on the side of caution with this powerful drug. I have found that starting low with the dose and progressing gives the dogs body time to adapt to the drug better than blasting them with a high dose and having side effects. I have to agree that the twice a day dose was ridiculously high, even the 120 is high. I would first get another Vet who in more knowledgeable of Cushings. An inexperienced vet can do more harm than good. Please even call Dechra the number is on the box 1-866-933-2472 they will give you guidance, they have a Dr. there also who can help you. Good luck and God Bless you and Bruno
Patti

[jorts]

thank you everyone for your responses. very good info!

we went ahead and found a new vet. the new vet was recommended by a friend and also has good reviews online. the new vet requested the old vet to fax over all the records so they had all of Bruno's test results for the Cushing’s tests. I took Bruno to the new vet this morning. The new vet indicated that 260mg per day of Trilstane wasn't overdosing Bruno….I was surprised to hear this because of all the posts from this forum as well as what was listed on the website for the meds. The vet says for Bruno’s weight you could give him even more if needed. She indicated most important part was that we test him regularly to make sure the meds are working properly. We decided to keep Bruno on the 2 pills per day (130mg total) and to redo the Cushing’s tests in 10-14 days from today to make sure the lower dosage is enough. We will also retest 3-4 months after that then every 6 months after.

I do like the new vet and they did a much better job explaining everything to me. They were very welcoming and I met the owner of the office (a vet with 30 years of service) who indicated he read over Bruno’s history and consulted with the vet I saw about the test results and he will help along the way with treatment.

Question: has anyone noticed their dog have a lack of appetite when they started taking Trilstane? Bruno hasn’t been eating regularly. Keep in mind that in the past 2.5 months we have moved 1500 miles, lived in 2 different apartments, and changed dog food (his old food isn’t sold here). We actually mixed his old food with new food together (he is currently still being fed this mixture). I contributed his lack of eating to those excuses, but he still hasn’t gained his full appetite back. He used to be starving and would eat immediately when I fed him. We now will feed him his breakfast and he doesn’t touch it until the evening. I am now suspecting it could be the medication. I mentioned this to the Vet this morning and she said to start him on new food (non-mixture) and see if that helps.

Bruno also was panting again last night…

I will keep everyone updated on Bruno.

Thanks again!!

[labblab]

Hello and welcome from me, too!

I am really glad you've decided to lower Bruno's trilostane dose. Even though his first monitoring ACTH result was within the desired therapeutic range, we know from our experience here that cortisol levels can continue to drop downward during the first several weeks of treatment. So I do think you are easing the risks of side effects and drug overdosing by cutting back and starting out at a lower level. In fact, Bruno's lack of appetite can certainly be associated with the rapid and extreme drop in his cortisol that accompanied his early dosing. Even when dogs don't suffer cortisol drops that place them in physiological crisis, they still can feel poorly from the effects of cortisol "withdrawal."

Since both your vets do not believe that the 260 mg. was too high a dose, I suspect they are relying on Dechra's initial dosing range of 1-3 mg. per pound that is published in their product insert for Vetoryl. In their defense, why wouldn't a vet think he/she could rely on the manufacturer's insert? However, we do know that those published materials reflect the dosing "norm" of several years ago and that with continued experience with the drug, Dechra, themselves, no longer advocate starting a dog off on an initial dose much higher than per a formula of 1 mg. per pound. Since your new vet is being so helpful, I hope you can encourage her to contact Dechra directly so that she can confirm the validity of the information that we are providing. Here's contact info for their Kansas office. They have veterinarians on staff whose sole job is to provide consultation to clinicians and pet owners.

http://www.dechra-us.com/Default.aspx?ID=365

I do feel concerned that your new vet does not seem to realize that loss of appetite can be a symptom associated with overdosing or a side effect of the drug itself. If Bruno advances with additional symptoms such as nausea, vomiting, diarrhea, or unusual lethargy, this can herald an unsafe drop in his cortisol and the trilostane should be halted immediately and your vet consulted. Even with your dosing decrease, he is still taking more trilostane daily than Dechra and most specialists would currently recommend.

Please do keep updating us on Bruno's progress, OK?
Marianne

[lulusmom]

Hi and a belated welcome to you and Bruno.

I've looked at the lab results you posted and unfortunately, we only have part of the results of the LDDS test. You have posted only the pre (resting) cortisol. There should be two more numbers for the four hour draw and the eight hour draw. Can you please check your paperwork to see if you can find those numbers and post them here? It is very, very odd that Bruno's bloodwork was completely normal. Can you please check the VetTest (blood chemistry) and LASERCyte (complete blood count) and make sure everything is within normal range? The usual abnormalities we see are elevated ALT and ALKP, cholesterol and low T-4. There are others but these are the most common. A urinalysis is usually done, including a culture. Dogs with cushing's almost always have dilute urine, low specific gravity and a good number of them have a urinary tract infection at the time of diagnosis. Do you know if your vet did any urine tests?

When you had the acth stimulation test done on April 25th, did Bruno receive his dose with food and was the test done within four to six hours after dosing? If the answer to either one of those questions is no, Bruno's post stimulated cortisol could be a lot lower than 4.4 ug/dl which could explain his lack of appetite. Did Bruno's prior vet or this new vet check his electrolytes? In view of the very large dose Bruno was on previously and his continued poor appetite, I do worry about possible adrenal necrosis causing low cortisol and aldosterone. If aldosterone drops too low, electrolytes are affected and can become life threatening. Because of Trilostane's known effect on aldosterone, your vet should be checking electrolytes every time an acth stim test is done. If Bruno were my dog, I would not be giving him any Trilostane until his appetite has improved. I had two cushdogs on Trilostane and if either had a reduction in appetite, vomited or had diarrhea, they were immediately taken off the meds and not restarted until they were back to their normal selves.

Since neither of your vets seem to know about the latest dosing recommendations, perhaps you can provide your new vet with some information so that s/he doesn't overdose any dogs in the future. I have provided an excerpt from a blog by Dr. Mark Peterson, a renown and very well published endocrine specialist. You will not that he mentions another specialist by the name of Feldman. This is Dr. Edward Feldman, an equally renown and well published specialist who pretty much sets the treatment protocol at UC Davis.


Initial daily dosage of trilostane
When this drug was first used in Europe over a decade ago, the original starting dose was 4-10 mg/kg/day (7-12). However, as experience with the drug grew, it became apparent that these doses were too high in many dogs and lower doses were needed. Accordingly, the dosing recommendation on the US package insert states that an initial daily dose of 2.2-6.7 mg/kg is recommended (4).

My recommended starting dose is either 2 mg/kg given once daily or 1 mg/kg given twice daily. This is similar to the doses used in this study by Feldman (13), where the mean trilostane dose administered to his dogs was 0.86 mg/kg, twice daily (or a mean total daily dose of 1.72 mg/kg). Like Feldman, I feel that it is best to start with a daily dose that is at the low end or even lower than that recommended in the package insert. I would never start a dog on a dose at the higher end of the recommended dosage range (4-7 mg/kg), although some dogs with Cushing’s disease will eventually require daily doses that may be this high or even higher (1,14).

The url to this particular blog is http://endocrinevet.blogspot.com/2012/12/low-dose-twice-daily-trilostane.html

[jorts]

Hi and a belated welcome to you and Bruno.

I've looked at the lab results you posted and unfortunately, we only have part of the results of the LDDS test. You have posted only the pre (resting) cortisol. There should be two more numbers for the four hour draw and the eight hour draw. Can you please check your paperwork to see if you can find those numbers and post them here? It is very, very odd that Bruno's bloodwork was completely normal. Can you please check the VetTest (blood chemistry) and LASERCyte (complete blood count) and make sure everything is within normal range? The usual abnormalities we see are elevated ALT and ALKP, cholesterol and low T-4. There are others but these are the most common. A urinalysis is usually done, including a culture. Dogs with cushing's almost always have dilute urine, low specific gravity and a good number of them have a urinary tract infection at the time of diagnosis. Do you know if your vet did any urine tests?

When you had the acth stimulation test done on April 25th, did Bruno receive his dose with food and was the test done within four to six hours after dosing? If the answer to either one of those questions is no, Bruno's post stimulated cortisol could be a lot lower than 4.4 ug/dl which could explain his lack of appetite. Did Bruno's prior vet or this new vet check his electrolytes? In view of the very large dose Bruno was on previously and his continued poor appetite, I do worry about possible adrenal necrosis causing low cortisol and aldosterone. If aldosterone drops too low, electrolytes are affected and can become life threatening. Because of Trilostane's known effect on aldosterone, your vet should be checking electrolytes every time an acth stim test is done. If Bruno were my dog, I would not be giving him any Trilostane until his appetite has improved. I had two cushdogs on Trilostane and if either had a reduction in appetite, vomited or had diarrhea, they were immediately taken off the meds and not restarted until they were back to their normal selves.

Since neither of your vets seem to know about the latest dosing recommendations, perhaps you can provide your new vet with some information so that s/he doesn't overdose any dogs in the future. I have provided an excerpt from a blog by Dr. Mark Peterson, a renown and very well published endocrine specialist. You will not that he mentions another specialist by the name of Feldman. This is Dr. Edward Feldman, an equally renown and well published specialist who pretty much sets the treatment protocol at UC Davis.



The url to this particular blog is http://endocrinevet.blogspot.com/2012/12/low-dose-twice-daily-trilostane.html

here are the dexamethasone Suppression test results:
Pre: 12.8
Post 8 hr Dex 5.5
sample appearance: serum received unseparated or partially separated from cells
that is all the info from this sheet that is relevant i believe...i don’t see anything on the sheet that says 4hr draw like you indicated.

the new vet did indicate she wanted to do a urine analysis next week. I don’t believe the old vet did a urine analysis.
also i dont believe anything has been tested with his electrolytes from either vet.

i left the VetTest and LASERCyte test results at home, but everything was in the "normal range" indicators on the sheet. if you want, i can scan and upload copies of his paperwork to this site.

as far as if Bruno took his meds with food the day of the test: probably not, he hasn’t been eating in the mornings (when we give him his meds). we give him the pills wrapped in a small piece of cheese (the only way he will take it) and put food in his bowl at the same time. He eats the cheese with the pills right away but doesn’t touch his food. On April 25th, my wife dropped him off at 730am and picked him up around 5:30pm that afternoon. i don’t remember exactly but he probably didn’t eat anything until he got home that evening.

[labblab]

Yikes, given this new information about the ACTH testing, I agree totally with Glynda that Bruno's cortisol may actually have dropped lower than the testing would indicate. His loss of appetite is very, very worrisome and like Glynda, if Bruno were my dog, I would stop the trilostane entirely until you see his appetite rebounding and his behavior normalizing. At that point (assuming that he doesn't worsen in the meantime which would point to a really serious drop in cortisol and/or aldosterone that would require medical attention), you can revisit starting back up with the trilostane at a lower dose.

I don't know if you had the chance to see my last reply posted on the page before this one, but I gave contact information for Dechra's office in Kansas. I really hope your vet will call them directly so as to receive confirmation of their revised dosing recommendations.

Also, it looks as though the original vet did not perform a 4-hour draw on the LDDS test. However, in Bruno's case, the 8-hour result is consistent with pituitary Cushing's in its own "right." So as luck would have it, the 4-hour result really isn't necessary for diagnostic purposes.

Marianne

[Junior's Mom]

I am no expert, so I hope the others will correct me...
Doesn't the 8hr result show suppression? Doesn't that mean no cushings?

[molly muffin]

I am no expert, so I hope the others will correct me...
Doesn't the 8hr result show suppression? Doesn't that mean no cushings?

No to some suppression will happen but it to not be cushings normally they suppress to below <1 or in nmol <27.59

That would be a complete suppression with the pituitary gland working.

Trilostane needs to be given with food to be absorbed correctly, and the ACTH test needs to be done within 4 - 6 hours of that meal/medication being given. This was just recently again confirmed with Dechra, due to a vet tell her people not to give with food.
I don't know if a bit of cheese would be enough to get absorption going and rather doubt it.

Sharlene and Molly Muffin

[lulusmom]

I was afraid Bruno had not eaten for the stim test which is not good. It is very important that he eat at least a small meal with his dose so what I would suggest for future tests is that you withhold his food the night before so that he will be hungry in the morning. You may want to keep him on morning feeding permanently.

Since the stim test results are not reflective of the full effect of trilostane when effectively absorbed with food, I remain concerned that his cortisol and aldosterone could be too low. I would heed Marianne's suggestion and withhold the Trilostane until Bruno is eating normally and feeling much better. Then you can restart at a lower dose and make sure the next stim test is done under optimum conditions.

If you are unable to upload copies of Bruno's bloodwork here, you can email them to us at k9cushings@gmail.com.

Glynda

[jorts]

thanks again everyone for your responses. i am going to buy Bruno some new dog food tonight to see if that helps. i am hoping the reason he is not eating because i am still feeding him mixed food (as i explained earlier) and maybe he doesn’t like the mixture. if that doesn’t help then i will talk with the vet more. i am also going to talk with the vet next week and bring her copies of what everyone has said on the forum.

Another question: the trilostane capsules (from a compounding pharmacy) that the previous vet gave us were 65mg for each capsule. currently i am giving Bruno 2 capsules in the morning (130mg total). i am in the process of ordering the next bottle of trilostane (this time name brand Vetoryl) and the capsule choices are either 60mg or 120mg. so i will be changing Bruno’s dosage yet again, from 130 to 120. will i need a whole new round of testing since i am changing the dosage again??

[Squirt's Mom]

Have you decided to stop giving the Trilo for now? That is more important by far than changing feeds today. ;)

[labblab]

If you are wanting to switch to brandname Vetoryl, I would definitely encourage you to buy 60 mg. capsules rather than 120 mg. capsules. The smaller capsules will greatly increase your dosing flexibility since Vetoryl also comes in 10 and 30 mg. capsules, too (so that you can add or subtract dosing amounts more easily). And if your vets do contact Dechra, I'm betting the recommendation would be to start Bruno off with a dose more in the neighborhood of 90 mg.

As for the testing, at this point it does not sound as though you have yet had an accurate ACTH test, regardless of dose. I think the timing of the next test will depend upon what you decide to do re: Bruno's dosing, and whether or not you give him a break altogether. For these reasons, I encourage you and/or your vets to call Dechra even before you place the order for the Vetoryl.

Marianne

[jorts]

good morning everyone! great news....we went last night and got new dog food for Bruno; when we fed him this morning he ate it all immediately!! so he just didnt like the previous mixed food we were giving him! i am soo happy! the food we got him is Nutro Natural Choice large breed senior dog food!!
I am going to call the vet today to see what they say about the dosage when ordering the new meds.
thanks again for everyone's help. i will keep you posted!

Seth

[Squirt's Mom]

Are you still giving the Trilo?

[jorts]

Yes. We never stopped the meds

[labblab]

But now you're giving only half the dose you were previously giving, right? If so, and if Bruno continues to eat and otherwise act normally, then I think you're OK to proceed to the next ACTH testing. But I would still order the Vetoryl capsules in the 60 mg. dosage rather than the 120 mg., just in case you do need to end up lowering his dose even more as time goes on.

Just to double-check, the new vet is planning another ACTH at the 10- 14 day mark. But then you've said they don't plan to test again until 3 months down the road? You really need to perform yet one additional ACTH at the 30-day mark, because Bruno's cortisol can continue to drift downward during the first 1-2 months of treatment. And you will especially want to recheck the ACTH results if you will be changing his dose again, even if just by a bit, during the interim.

Marianne

[jorts]

We are currently giving Bruno 130mg in the morning. I just spoke to the vet. She said since we are about to change medicine dosage( switching to vetoryl)we should hold off on the testing until Bruno has been on the new dosage for 10-14 days and then we can do the testing. So I am ordering 60mg Vetoryl capsules and will give Bruno 2 capsules each morning (120mg). I am satisfied with this especially since he is now eating. I will watch him closely and report any other possible side effects or issues. Thank you all for you help!!

[molly muffin]

Yay! So glad to hear that Bruno is eating now!!! That's great news.

Sharlene and Molly Muffin

[lulusmom]

Great news! It must be pretty annoying to be a dog and have food you hate being placed in front of you every day. If only they could talk, huh? :D My current pups are all good eaters, at least today, and I change up their meals, alternating three commercially prepared raw and two slow cooked diets twice a day. They never have a chance to get bored, their poops are always perfect and so is their bloodwork lately. This is despite their heart problems so I'm ecstatic. Hopefully Bruno will continue to like and do well on his new food.

Please make sure you give Bruno his Trilostane with food to insure maximum absorption. This will also insure that the acth stimulation tests are done under optimum conditions. Please keep us posted.

Glynda