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View Full Version : New to Cushings - Trilostane Not Working HELP!



Lenabelle
08-24-2014, 04:13 PM
Hi all! I am brand new to the forums, but from reading the threads I believe I could not have found a better group for advice. I am desperate and heartbroken. This is a long post, but I feel the full story is necessary.

I rescued my sweet Lena, 43 pound beagle/hound mix, 9 years ago from the pound, when she was between 1 and 2 years old (vet estimates varied between 1 & 2) She is an angel, and I was so lucky to have had such luck at the pound, with no history on her. She was polite, kind and completely housebroken. She has always been very anxious, however. Over time she settled a lot, but when I first had her you could tell someone had seriously mistreated her. She has since been my shadow and best friend, and I have always worked daily to comfort her.

Our issues began about 3 months ago. Until last November, Lena and I lived on a horse farm, where she roamed the pastures and chased birds, always faithfully finding her way back to the house every couple of hours for water and a snuggle. In November, after graduating with my Masters, I got the dreaded 9-5 and had to move to the city. She was now living in a small house with my fiancé and I, with both of us gone most of the day. I will say she tends to lay around, so I thought she adjusted well to city life (we had lived in an apartment in town my first year of undergrad and she was a couch potato, so I assumed she adapted). My fiancé had lost his dog to brain cancer, and we got a puppy around Easter to be his dog, and keep Lena company during the day. In typical Lena fashion, she is not happy not being the queen. She never fights with him, but I could tell her anxiety was coming back. Then it all went south. She started peeing in the middle of the night in her bed, which had never happened before. Then peeing in the house, sometimes when awake and others while sleeping. She was having bouts of inconsolable anxiety that only long walks seemed to settle, and her water intake increase significantly. I took her to multiple vets, and everyone said she looked great and was just rebellious. I never believed it, because vengeful isn't her nature. She had clear bloodwork around the end of May. Then again in July, she had a high liver value when I took her in after another bout of accidents and she became unable to sleep through the night without anxiety. Her liver value was 444. The vet said stress can cause this, but he wanted to test for Cushings, even though she does not have the skin issues, weight gain, or ravishing appetite he expected to see. He said the test came back positive, but assure us we caught it early and we could easily treat it. He put her on 60mg of Trilostane twice daily, as well as estrogen for the incontinence. The estrogen was changed two weeks later to prion, which worked for a spell, and we are now back to accidents. I cannot see any change in her after just over a month on Trilostane. If anything, she seems worse. I began taking her on long walks daily, and honestly exercise seems to make more of a difference in her than any of these pills. It makes sense, as perhaps the stress raises cortisol, and exercise works it out of her system. The vet now wants to do more bloodwork, to the tune of $280. Then try another dosage. This is extremely expensive, and to be honest it's breaking us. I want to help her and get my old happy girl back, but wouldn't I have seen SOME difference by now? I have been tempted to take her off the Trilostane, feed her a holistic, home cooked balanced diet, and try milk thistle, dandelion and lots of exercise like she used to have and see if this helps. If I know my girl, I think this is all triggered by stress.

Any opinions? Advice? I'm open to anything. Are there natural treatments for this?

Squirt's Mom
08-24-2014, 06:01 PM
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Trixie
08-25-2014, 12:07 AM
Hi and welcome to the board...Lena sounds like a sweetheart and how lucky you found each other!
There are many experts on the board and they will want to see your dogs test numbers. Do you know which test they did for Cushings? Was it the low dose dex test? If there's anyway you can post her bloodwork numbers...and the results from the test that was positive for Cushings it would help people to advise you better.
It's worrisome that Lena is on a pretty hefty dose of Trilostane for her weight and the only Cushings symptoms are high liver numbers and excessive drinking but not all dogs will have all the symptoms. The restlessness at night is also a common Cushings symptom so Lena probably has 3 it seems.
Do you know if Lena has the Pituitary or Adrenal form of Cushings? If she didn't have it I think the dose of Trilostane that she is on would have made her very sick by now.
Some people have luck with Melatonin for the restlessness and the anxiety. For "atypical" Cushings (another type) people combine the melatonin with lignans. Since I am unfamiliar with using these I'll let someone else advise you on them.
I agree with you on the exercise...my dog was diagnosed but we never missed our very long morning walks..I think it helped her greatly but ultimately it was the medication that worked to control the disease for her. Some dogs do end up needing a high dose of medication but only testing can help figure out where your dogs levels are...and yes, it's terribly expensive. Once you settle into a dose the expense is not as bad as it is in the beginning. There are online resources that offer some better pricing on the medication than a vet's office would offer if you do end up continuing. If you can get the right dose your dog can do well..my 10yr. old schnauzer is completely controlled and we had major excessive drinking/peeing, panting and big appetite and liver numbers up in the thousands. It did take time though...we tweaked the dose for months and it took that long to see the symptoms subside.
Hopefully some others will respond soon and you can get some more input.
Barbara

Lenabelle
08-25-2014, 10:28 AM
Thank you so much for your reply. You make a very good point, the medicine probably would make her very sick if she did not in fact have Cushings.

TO UPDATE HER DOSAGE - she is getting the 60mg ONCE per day. I was thinking of her incontinence pill when I said 2x daily. Does this sound like a normal starting dose?

Harley PoMMom
08-25-2014, 04:01 PM
Hi and welcome to you and Lena from me as well!

With Trilostane/Vetoryl it is better to start low and work one's way up, usually the best starting dose is 1mg/per pound of a dog's weight. We have seen less adverse effects when dogs are started out at the low end of the dosage scale so for Lena's weight of 43 lbs a starting dose of 30mg or 40 mg would be ideal.

Cushing's can be very difficult to diagnose and unfortunately it is often misdiagnosed. Other non-adrenal illnesses, such as diabetes and thyroid issues, share some of the same symptoms as Cushing's and should be ruled out. Have these two been ruled out?

Getting copies of all tests that were done on Lena and posting the abnormal values would be great, we are especially interested in all results from all tests for Cushing's. Does Lena have any other health problems? Is she taking any herbs/supplements/medications?

Please know we will help in any way we can so do not hesitiate to ask all the questions you want.

Hugs, Lori

Lenabelle
08-27-2014, 02:52 PM
Hello all. I do have more information from the vet today.

She had been receiving 60mg of Trilostane once per day. Her predex number from her initial diagnosis was 325, 4 hours post was 58, then 8 hours post was 177. He said she has pituitary dependent Cushings.

Any and all feedback and information is appreciated. I am very new to this and my head is spinning. :( The medication does not currently have this under control, and she is back today for an ACTH test to see where we are. She is still drinking excessively and therefore having accidents.

Harley PoMMom
08-27-2014, 03:50 PM
She had been receiving 60mg of Trilostane once per day. Her predex number from her initial diagnosis was 325, 4 hours post was 58, then 8 hours post was 177. He said she has pituitary dependent Cushings.

Those results look like they came from a low-dose dexamethasone suppression (LDDS) test. Are the units of measurement for those results in nmol/L? When I convert them to ug/dl, which are the units we are used to seeing here in the U.S.: 325 = 11.77 ug/dl, 4 hour 58 = 2.1 ug/dl and 8 hour 177 = 6.42 ug/dl, they do point to the pituitary type of Cushing's. However other non-adrenal illnesses can create false positive results on the LDDS test which is why a vet performs multiple tests to validate a diagnosis of Cushing's.

Was Lena checked for diabetes? How about an UTI? The symptoms of increased drinking and urination can be attributed to both diabetes and/or an UTI and need to be ruled out.


Any and all feedback and information is appreciated. I am very new to this and my head is spinning. :( The medication does not currently have this under control, and she is back today for an ACTH test to see where we are. She is still drinking excessively and therefore having accidents.

Due to a dog's system producing excessive amounts of cortisol a dogs kidneys work harder and thus they pee rivers and in order to keep up with the output of the kidneys a dog has to drink large amounts of water, which in turn makes dogs with Cushing's having diluted urine. Does Lena have diluted urine? Was an urinalysis done, and if so could you post those findings for us? Thanks!

Hugs, Lori