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Bandit's mom
01-30-2012, 03:41 PM
Hi all,
My dog Bandit has been diagnosed with Adrenal based Cushings. He is a 52-pound (probably 5 pounds underweight) aussie/border collie mix; we think he is 11 years old or so. We don't know his history because we only adopted him 2 years ago.

His ACTH score is 25 ... I believe that is the cortisol level. I don't have a hard copy of his results, I just got them verbally over the phone. He has all the classic symptoms ... bad hair, distended belly, drinks a lot, pees a lot, pants excessively, and has a voracious appetite. These symptoms showed up in the last 4 months. We started testing him about 3 weeks ago. He had a blood lab, ultra-sound, thyroid tests, and urine culture. We saw a tumor on his adrenal gland.

To complicate matters, he has a large mass on his liver and bladder stones. We have been told that without invasive surgery, we can't determine if the mass on his liver is benign or malignant.

We are scheduled to start him on (2) 60mg tabs of trilostane per day starting today. So, a total of 120 mg/day. I am very nervous about side effects, but also about his liver mass. My vet tells me she is not concerned about the liver mass because 1) we don't know whether it is benign or malignant and 2) there is no indication of liver disease based on his blood lab. Regardless, I'm worried. Scared to death actually.

Does anyone have any thoughts about the dosage? I get the impression from on-line reading that it is best to start with a low dose and adjust upward as appropriate. Is 120 mg/day a high dose for a 52 pound dog?

I am SO thankful this site exists ... it has been invaluable to me.

Best regards, Bandit's mom

Lady's mom
01-30-2012, 04:09 PM
Everybody here will tell you that's a high dose, about double for her weight, it seems.

I started my Lady on twice what was recommended on here, because my IMS told me to. After 4 days she became very sick, so I took her off the trilostane completely.

I'm sure you'll get lots of information here shortly.

Bandit's mom
01-30-2012, 04:21 PM
Hi there,
Thanks for your quick response. What kind of symptoms did your pup show when she got sick after starting on the Trilostane? Did you ever go back to it at a lower dose?

marie adams
01-30-2012, 04:41 PM
Hi Bandit's Mom,

Welcome to this site--I know we wished this site was not necessary, but the experts here will help you along the way. They are wonderful, caring people--in fact everyone here is. :)

I have no experience with Trilo as my aussie, Maddie was on Lysodren with no side effects. I could not have made it through the loading period and everything else along the way without the help and support from everyone here. :)

So between your vet and K9 Cushings you will be in good hands. You can go to the Helpful Resources section of this site to get more info.

If you can get the test results to post; that will help the experts with answers to your questions. Sometimes the vets will fax them or email them to you.

Take care!! :)

Bandit's mom
01-30-2012, 04:51 PM
Thanks so much for your kind words Marie! They mean a lot. I'll compile the results that I have and post them this evening.

I'm glad your aussie had a good experience with the meds. It is good to know that those cases exist.

Love the dog in your profile photo. Is he/she a sheltie or full size collie or am I completely off? Very handsome dog.

lulusmom
01-30-2012, 05:35 PM
Hi Bandit's Mom and welcome to the forum.

You and Bandit are now officially part of our family and we will do whatever we can to help you both maintain a good quality of life. Sometimes that is harder to do for our members than it is their dogs. :D It's a frustrating and scarey disease but the more we learn, the calmer we become and more importantly, we become the best possible advocates for our cushdogs. With my rah-rah speech over, lets get down to the nitty gritty. :D

If Bandit were my dog, I absolutely would not start him on the large daily dose of 120mg. A lot has been learned since Vetoryl (Trilsotane) was introduced here in the U.S. and one of those things is that following the recommended dosing published in Dechra's packaging insert can be very risky. One of our administrators has discussed appropriate dosing with a veterinary internal medicine specialist on staff at Dechra and rather than me cite Marianne (labblab), I am including an excerpt from one of her posts to another member's thread below:


Even though Dechra's published literature states an initial dosing range of 1-3 mg. per pound, for quite some time now, the vets who serve as their technical reps have verbally advised that it is generally best to start at the very lowest end of the range in order to minimize the risk of overdosing and/or unwanted side effects: using a formula of 1 mg. per pound. Marianne

This information is definintely in keeping with Dr. Ellen Behrend's educational contribution on Dechra's own website. She is a contributing expert on Trilostane and provides educational material on Dechra's veterinarian's CE page. Her latest contribution, entitled Update on the Use of Trilostane, includes her recommended starting dose of 2mg/kg. Bandit's weight of 58 pounds equates to approximately 24kg so Dr. Behrend would probably start him out at 40 or 50 mgs. That is less than half the dose your vet is prescribing. You can find Dr. Behrend's paper at www.dechra-us.com/Resources/case-studies.aspx?PID=21049 I would suggest that you print it out and share it with your vet.

I would also print out Dr. Edward Feldman's article in the veterinary news.dvm360 site. Dr. Feldman is a reknown and widely published endocrinologist who is greatly influential in setting protocol at UC Davis veterinary teaching hospital. It has been their experience that following the manufacturer's suggested can place a dog at risk. After much experience with the drug, UC Davis established their own treatment protocol starting their patients on an even lower dose of 1mg/kg. This would equate to 24mg once daily for Bandit. Huge difference, huh?

http://veterinarynews.dvm360.com/dvm/article/articleDetail.jsp?id=460965&sk=&date=&pageID=3

Signs of cortisol dropping too low is extreme lethargy, loss of appetite, vomiting, diarrhea and trembling. If you see any of these, stop dosing and contact your vet immediately. Most vets who prescribe Vetoryl do not prescribe prednisone to keep on hand in case cortisol drops to low but if I were you, I'd ask for a few pills just in case. Vetoryl (Trilsotane) is extremely effective in dropping cortisol like a rock in the first couple of days so a dog can start acting a bit punk during this time due to cortisol withdrawal. This usually passes within a few days.

I'll be looking forward to seeing all of Bandit's test results. In the meantime, please feel free to ask any questions you may have.

Glynda

Bandit's mom
01-30-2012, 06:15 PM
Hi Glynda,
Thanks so much for all of the information and concern! I read through Dr. Behrend's paper and noticed that her recommendations are specific to pituitary based cushings, whereas Bandit's Cushings is adrenal based, which my vet tells me justifies a higher dose to start. Adrenal gland necrosis (a risk of the Trilostane) is apparently not dose dependent according to her, so he'll either have it or he won't. Dosage doesn't matter.

My vet also reminded me that Bandit's blood pressure is VERY high (210 - 220-ish). We put him on BP meds for a week, but his measurements have not come down. Therefore, the vet believes we need to address the Cushing's in order to address his high BP. I'm guessing she is also using his high BP to justify the higher dose i.e. we need to be agressive to ensure his high BP doesn't cause its own set of problems.

I'm conflicted because although Dr. Behrend's recommendations are for pituitary dependent dogs, I don't know why it would be any different for an adrenal based situation. I'm open to any other information I can present to my vet ... I will definitely print Dr. Behrend's paper and show it to her.

lulusmom
01-30-2012, 08:37 PM
Hi again,

I am very concerned about your vets lack of knowledge about Vetoryl and think s/he may have its mode of action confused with Lysodren. Adrenal tumors can be highly resistant to Lysodren so massive doses may be required. Lysodren has a cumulative effect and specifically targets and kills off tissue in the adrenal cortex. Vetoryl is an enzyme blocker that works completely differently in that it interferes with the actual synthesis of cortisol. Standard Vetoryl dosing should be prescribed for both forms of cushings. I believe Dr. Behrend's paper is definitely geared to dogs with pdh because the vast majority of vets are interested in pituitary based disease. 85% to 90% of dogs with cushing's have pituitary based disease and the remedy of choice for the majority of the remaining 10% to 15% of dogs with adrenal tumors, would be surgery, not Vetoryl treatment.

I don't believe anybody has yet to figure out how Vetoryl causes adrenal necrosis but I believe the experts like Drs. Edward Feldman, Mark Peterson, Ellen Behrend and Audry Cook believe that it could have something to do with the size of the dose, given they all start their patients on lower doses than those recommended by the manufacturer's. By the way, UC Davis routinely uses Trilostane pre-op for their adrenal tumor patients and to my knowledge, they use the same standard dosing they use for PDH dogs.

Lady's mom
01-30-2012, 08:54 PM
You asked me about Lady's symptoms: they're all there in glyndaS post, every one of them.

The problem I had in recognizing this was because they didn't all happen at once or as severe. She was becoming lame before I started the vetoryl, so I saw it as a continuation. Then it began to get worse.

She had had pancreatitis a year ago, so I saw this as " got it again."

It wasn't until after she had been off the vetoryl about three days and I started to see her symptoms disappear that I realized it had to be the high dosage that was causing it.

She has not started back on vetoryl st all, because *all* her symptoms disappeared completely and have not re

Squirt's Mom
01-31-2012, 10:36 AM
Hi Bandits Mom and welcome to you and Bandit! :)

I have a few concerns - your vet's statement about the dose of Trilo not causing adrenal necrosis problems is downright scary. Trilo can, does and will cause necrosis of the gland just as Lysodren does when protocol is not followed. Dechra's own literature lists this as a possibility.


Occasionally, more serious reactions, including severe depression, hemorrhagic diarrhea, collapse, hypoadrenocortical crisis or adrenal necrosis/rupture may occur,...

Also from the Dechra product insert supporting Glynda's statement -


The use of VETORYL Capsules will not affect the adrenal tumor itself. Adrenalectomy should be considered as an option for cases that are good surgical candidates.

Bandit's high blood pressure is also a concern since some of the meds used to treat it can cause problems when used with Trilo. Dechra does NOT say they shouldn't be use- just that they should be used "with caution". Be sure your vet is aware of this. ;)


Angiotensin-converting enzyme (ACE) inhibitors should be used with caution with VETORYL Capsules, as both drugs have aldosterone-lowering effects which may be additive, impairing the patient’s ability to maintain normal electrolytes, blood volume and renal perfusion.

Finally, the liver situation is a huge concern to me. Liver disease, kidney disease, tumors on organs other than the adrenals or pituitary, diabetes, hypothyroidism- all these conditions plus others mimic Cushing's. You already know there is a mass on his liver. Let me share my Squirt's story with you -

She tested positive for PDH on five different tests - the LDDS, HDDS, ACTH, UTK panel and 2 ultrasounds. The second time the ultrasound was done, I was told she had a mass on her spleen that had to come out. Once that tumor and half her spleen were removed, her cortisol returned to normal. The stress of that tumor caused her cortisol to be elevated.

You have an ultrasound that shows Bandit has a tumor on his adrenals so you know that is in play. But you also know there is something going on with his liver. Because of my experience with Squirt's tumor, the liver would be my first focus. Here's why - if the issue with the liver is playing a role in his elevated cortisol then the tests to monitor the Cushing's could be confusing to say the least. The Trilo will help control the adrenal activity caused by that tumor but I question whether it will control cortisol that may be caused by the liver issue. I could be way off base here but it seems to me this is a situation in which it would be easy to get into a crisis situation because the dose could continue to be increased when the problem was caused by the liver not the adrenals. In other words, a dose of, let's pretend, 50mg a day would control the adrenal tumor but because the liver is continuing to cause stress which continues to cause cortisol to be released, the levels remain higher than desired so the dose is increased. Like I said, I could be off base with this thinking but I had to put it out there just in case. ;) You should know you have just met the worry wart of the group. :rolleyes::o:D

From Dechra's product insert - (also for your vet)


Do not use VETORYL Capsules in animals with primary hepatic disease or renal insufficiency.

As Glynda said, you and Bandit are now family. You are not alone on this journey. We will walk every step of the way right by your side. You have found the very best bunch of folks in the world. Their knowledge and first-hand experience is astounding, and the support and compassion found here cannot be beat. Please, never hesitate to ask questions. Read all you can then ask more questions. We will do our best to help you understand; if needed, we will research and learn along with you.

I'm glad you found us and look forward to learning more as time passes.

Hugs,
Leslie and the gang

marie adams
01-31-2012, 12:13 PM
Hi Bandit's Mom,

I am so glad you are getting help with your questions--I told you the experts would be along--like they said you are now family.

Maddie was all Australian Shepherd--black tri in coloring. She was a big female weighing in, when we started the Cushing's journey, at about 70 lbs--a little over weight, but that was caused by the inactivity of the hind leg weakness, becoming more lethargic, and that ravenous appetite. She was use to running by my husband on a bike for 6 + miles each day. That picture was taken in Mammoth where she would go with us on our annual ski/snowboarding trip each year. She loved the snow--always on the lookout for squirrels.

This is a stressful journey, especially in the beginning, so you need to take care of yourself and get sleep. You will be in front of your computer looking and looking; reading and reading, but I know from experience this is the place to come for answers--ask anything.:)

((((HUGS))))

Bandit's mom
02-17-2012, 01:37 PM
Hi all, I wanted to thank you for your advice and update you on my experience. Although my vet said to start with 120mg, I decided to be conservative and start with 60 mg. She said that was fine to try, but that I should increase the dose to 120 mg after a week.

After just a week on 60 mg once daily, I noticed increased energy levels and Bandit was wagging his tail again. Yay! Same after 15 days, but not a huge difference in his appetite or drinking habits. After talking to a vet (Dr. Fox) at Dechra by phone, I decided to up the dose by 30 mg and gave Bandit 60 mg in the morning and 30 mg in the evening, so a dose increase and change to twice daily dosing. Bandit reacted negatively ... significantly decreased energy overall, and whole body trembling when he would first wake from sleeping. After two days of the increased dose and the negative effects, I stopped the extra 30 mg. He seems much better. I hope that the additional 30mg I gave him for two days did not cause permanent problems. I'm assuming that since the negative effects ended after I ended the additional dosing, that I didn't do any permanent damage. I continue to watch him closely of course.

We have his first "on-Trilostane" ACTH test next week. I recognize that we should have done this test after the first 10-14 days of treatment; I hope that isn't a problem.

Another piece of information: I started Bandit on alcohol-free and sugar-free Milk thistle about a month ago, as well as Supraglan. I'm hoping that the extra liver support from the milk thistle is good for him. I felt like the Supraglan couldn't hurt.

Ultimately, I look forward to the ACTH test to see where Bandit's cortisol levels are. I'm hoping and praying for significant improvement. His blood pressure remains VERY high ... 250 last time we checked about 10 days ago even while taking Benazapril and Amlodipine. I believe my vet's strategy right now is to control the cortisol levels with hopes that a lower BP will result. I don't understand this rationale as Dr. Fox at Vechra says controlling the Cushing's will not result in a decrease in BP.

I heard all of your comments and concerns in previous posts. Thank you. I will certainly be aware that Bandit's symptoms could be more a result of his liver tumor, than of Cushing's. Thanks for your story on that front, Squirt's mom! I'll continue to keep you updated as I believe this forum provides an excellent service!

lulusmom
02-17-2012, 02:59 PM
Yes, it is proper protocol to do an acth stimulation test no later than 14 days after starting Vetoryl and no dose adjustment should be made without one. If Dr. Fox was aware that your vet was not following proper protocol and had not done any acth stim tests, then I am absolutely dumbfounded that she would have suggested an increase in dose, thereby placing Bandit at risk. Thank goodness you are vigilant in monitoring Bandit because things could have been a whole lot worse for him. How long after starting Vetoryl did you speak with Dr. Fox and was she aware that Bandit had not had an acth stimulation test yet?

The manufacturer of Supraglan, Petwellbeing, admitted to me in writing that they have done no clinical trials, or even informal testing, to prove the efficacy or safety of their product. Therefore, other than testimonials, there is no way to know whether it's good or bad for a dog. As for testimonials, we've had at least one member who sent in a rave testimonial for Supraglan but subsequently came here for help because it wasn't the super tonic she thought was going to help her dog. This company claims that it normalizes adrenal function for dogs with Addison's and Cushing's. This is an amazing and most ridiculous claim because these two conditions are polar opposites. The good news is that Supraglan has been around for a while and I haven't found any evidence of lawsuits against them.

Glynda

P.S. I forgot to mention that if Dr. Fox told you that cushing's does not cause hypertension (high blood pressure), she would be absolutely, unequivocally wrong. Your vet's rationale is totally understandable and would be shared by any veterinary professional who is intimately with cushing's. Perhaps you may have misunderstood Dr. Fox?

Bandit's mom
02-17-2012, 04:10 PM
Hi there,
Thanks for your response. I may not have been totally clear: I don't believe that Dr. Fox (at Dechra) said that Cushing's cannot cause high blood pressure. I am fairly confident that Dr. Fox said, "Typically, controlling Cushing's will not control blood pressure". This is a different statement I believe, although somewhat counterintuitive. He also said that he believed twice daily dosing may improve the chances of controlling blood pressure. Hmmm. I spoke with him about 10 days after I'd started Bandit on 60 mg Q24H. I'm pretty sure he knew Bandit was on a lower dose than recommended by the Vitoryl insert.

Neither vet (the general practitioner, and the individual who did Bandit's ultrasound and recommended treatment) seemed to blink that I upped his dose from 60 mg Q24H, to 60mg in the am and 30 mg in the pm without an ACTH test. I can speculate: maybe my vets felt that since I started at half the recommended dose it was okay to increase it up to the recommended dose without an ACTH test. Frankly, I believe my vets are more concerned about the cost of the tests than I am. To their credit, I believe they are trying to minimize the amount of money I spend; so, I need to be clear with them that I will spend what it takes to NOT overdose my dog even if that means multiple $500 tests.

Thank you for the information on Supraglan. It actually makes sense to me that if Supraglan helps to restore normal adrenal gland function, then it could benefit dogs with Cushings or Addisons. So, I don't know that I agree that PetWellBeing's claim is that far off. However, point taken that it hasn't gone through testing.

Thank you again for your interest and responses to my posts!

Best, Amy