Need help with duchess!

[LabMom]

Duchess is our 13+ year old lab that was diagnosed with Cushings on April 7. We started her on 120mg compounded trilostane at that time. We have seen virtually NO improvement in her extreme panting, water drinking, and muscle weakness. Muscle weakness is probably even worse, and she can barely get up by herself anymore.

My family is so torn by this, we have spent close to a thousand dollars, and the vet said if the medication isn't helping her to discontinue it. I'm finishing out the two months that I purchased, hoping it will improve, but nothing. So NOW what do we do?

Our fear is that she is in pain, or miserable. She pants ALL the time. She often can't get up without assistance. I don't know what else to do for her.

Here are her lab numbers.......Pre cortisol was high at 6.8, 4 hr low at 0.9, and 8 hr normal at 1.7. The rest of her physical was unremarkable with good xrays showing no arthritis, no heart issues (other than a huge layer of fat around it from Cushings), and general good health for a 13 year old dog.

Please help! We are having trouble watching this member of our family seemingly suffer through this disease!

[addy]

Hi and Welcome,

The lab numbers you posted seem to not be an ACTH test. Has an acth test been done on Duchess since starting Trilostane? There would be a pre and post number. The test takes about an hour, so there is no 4 hour number.

Could you please post the ACTH test that should have been done about 14 days after starting trilostane and then again about 30 days after starting trilostane?

We need as much info as you can provide in order to assess what may be happenening to Duchess.

hugs,
addy

[labblab]

Hello and welcome to you and Duchess,

The lab numbers that you posted appear to be those for a diagnostic LDDS test. I assume this test was performed prior to starting Duchess on the trilostane. Can you tell us more about her medical history -- when the Cushing's symptoms started, and whether any other blood testing was done in addition to the "positive" LDDS? For instance, a dog with Cushing's will typically exhibit elevations in liver values and cholesterol. Also, how much does Duchess weigh?

Cutting to the chase, however, have any monitoring ACTH tests been performed since starting Duchess on the trilostane? Assuming that she does have Cushing's, this is the only way to tell whether she is taking a therapeutic dose of the trilostane (plus, it is the only way to make sure that her cortisol has not done the reverse -- dropped to an unsafe level on the medication). Most treatment protocols call for a monitoring ACTH 10-14 days after beginning treatment and then again after 30 days. Without those test results, it is impossible to evaluate the safety or effectiveness of the medication. Duchess may need a different dose entirely. Initial dosing is determined by weight, but there can be a great deal of variability in the manner in which each individual dog metabolizes the drug. So subsequent dosing changes are governed by monitoring ACTH results in conjunction with observed behavior.

Thanks so much for any additional info that you can provide us re: Duchess' diagnostic and treatment history.

Marianne

[frijole]

Hi! Marianne is right - there should have been acth testing to monitor the dosage to see if it is working. This test only has 2 numbers on it.

Can you please tell us how much your dog weighs? Thanks! Kim

[sunnie's mom]

Hi, sorry to hear about Duchess.My dog also has the muscle weakness.We have been on Vetoryl since April 26. Sunnie doesn't drink as much but we haven't noticed any change in her back legs.I'm still hopeful.Maybe it just takes awhile for it to work.

[LabMom]

Duchess weighs 70 pounds. In retrospect, she has probably had Cushings for several years, but we just thought she was getting older, weaker, and ate a lot. The vet was of the opinion that if the trilostan was not helping her that it probably wasn't worth pursuing additional testing or other medication either. Her inital liver and kidney function tests were normal. I don't know of any other ACTH tests that were done. If I go back, what do I ask for?

[frijole]

Glad you found us. We'll give you a crash course but feel free to check out our resource section as you can access everything you need to know about cushings.

Most of us had dogs with cushings for years and accidentally discovered it so no need to feel bad - it is common. Also please know that your dog can live a very normal life once treatment has started (and dosage amount is right).

To answer your question - we need to know everything done to diagnose the Duchess and the testing since the diagnosis... so go to the vets and ask for photocopies of all lab tests done (you give them the date). You paid for them - you deserve 'em :D

It's a bit strange that you don't know what an acth test is because if your dog actually used trilostane you would have had to have had testing done to see how it was going... (it's the equivalent of doing a glucose test on diabetics)

Don't worry about not knowing it all - you will be an expert before long and that's why we are here... to help. You are your dog's voice in this and it is important to get up to speed so you can quiz the vet and make sure the Duchess is treated "royally". Sorry... couldn't help myself. :p;)

When you get the results please post them so we can take a look. Thanks. Kim

[LabMom]

So I guess you are all of the opinion that Duchess needs the ACTH test even if there has been no improvement with the Trilostane to see where we need to go from here, is that right? I was given the impression that we had exhausted those options. She needs some relief.

[Roxee's Dad]

Hi there :)

An ACTH stim test is a very important tool in the successful treatment of cushings. The results will enable the vet to know if the dose needs to be increased or decreased. Otherwise it is just a guessing game and can be very dangerous to the health of a cush pup.

Once the cushings is under control, the testing becomes much less frequent. Since it seems the symptoms have remained, an increase in dosage may be required. Although 120 mg for a 70 pound pup seems it may be high, but not unheard of.

Has Duchess been tested for diabetes?

[frijole]

Actually, I wasn't so worried about getting the next acth test but rather to see if any had been done (getting the records). I am trying to figure out how your dog was diagnosed with cushings (just one test or more than one). I am wondering if she even has cushings.

I am hoping to see some blood work ( a full panel) which might include a thyroid test. Cushings is often misdiagnosed. Other diseases have similar symptoms including diabetes, hypothyroidism for example.

So maybe the dosage was too low and maybe the dx was wrong. Not sure. That is why the tests are important.

Kim

[labblab]

Duchess weighs 70 pounds. In retrospect, she has probably had Cushings for several years, but we just thought she was getting older, weaker, and ate a lot. The vet was of the opinion that if the trilostan was not helping her that it probably wasn't worth pursuing additional testing or other medication either. Her inital liver and kidney function tests were normal. I don't know of any other ACTH tests that were done. If I go back, what do I ask for?
I am very worried as to whether your vet has had experience with diagnosing and treating Cushing's. It is a huge red flag of warning that he would prescribe trilostane without following up with the appropriate ACTH monitoring testing -- and also that he would throw in the towel without finding out whether she's even on the correct dose. He, himself, even seems to be questioning whether Duchess has Cushing's at all.

I know you have already spent a lot of money, but before throwing good money after bad, I strongly encourage you to see if you can locate a vet in your area who has specialized training in diseases such as Cushing's. This often requires finding an Internal Medicine Specialist, or "IMS." Here's a link that will help you find out whether there are any specialists in your area:

http://www.k9cushings.com/forum/showthread.php?t=182

For monitoring the trilostane, the test you need to have done is an ACTH stimulation test. The test is expensive, and it requires that the vet have a special stimulating drug on hand to inject. If your vet has not even mentioned this test to you, I am fearful that either he does not have the stimulating drug or that he is unfamiliar with the testing protocol. Before spending the money on the test, I would want to make sure that the test is given properly so that the results are meaningful. For that reason, you may want to consult with a specialist before you go any further at all. The specialist may call a halt to the trilostane altogether for the time being.

As far as trilostane treatment itself, Duchess should always be given her trilostane in the morning along with food. The ACTH test takes 1-2 hours, and should be performed 4-6 hours after dosing with the trilostane. And the test should be performed approximately two weeks after treatment begins or after any dosing change. It is very common for dogs to require dosing changes before arriving at the appropriate dose.

I'm so sorry that Duchess is doing so poorly. At her age, I know it must be heartbreaking to see her suffering rather than savoring her golden years. As a Lab-lover myself, I know that at age 13, Duchess is nearing the end of her natural lifespan :o. And so you may not choose to put her through aggressive testing and treatment that would otherwise seem like a more reasonable option at a younger age. But a consultation with a specialist may at least give you a few more answers and put your mind at ease that you are making the best decisions possible for Duchess at this time in her life.

Marianne

[LabMom]

She was negative for diabetes, negative for thyroid disorders. That is why the dexamethasone suppression test was done. Her symptoms are clearly Cushings: hair loss in patches, fat redistributions ( so much so that her heart could not be heard clearly), mishapen head, panting, lots of water drinking, and muscle weakness, particularly in the back legs. It was truly an ah-ha moment when we read about Cushings and we were so excited to begin this treatment!

My vet has told me that this treatment has failed. I need to know what to ask for next please!

[labblab]

I am sorry to be so blunt, but if your vet has told you that this treatment has failed without performing even one monitoring ACTH stimulation blood test, you need to ask for a new vet. There is absolutely no way to know whether Duchess is taking the correct dose of the drug without this monitoring. Here is a link to the U.S. Product Insert for Vetoryl (brandname trilostane). Do read through it so as to get a better understanding of the proper use and monitoring of this drug:

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

Assuming that Duchess has Cushing's, there are several variables that could be at play. The once-daily dose that she is taking may be too low. Or she may need twice-daily dosing in order to control her symptoms. Or it is even possible that the compounded trilostane that you are using is actually delivering a smaller dose than it is labelled for. There is no way to decide upon the next step without knowing her current cortisol level by performing an ACTH stimulation test.

If your vet is telling you that trilostane is ineffective without having performed the necessary ACTH stimulation monitoring test, you need a new vet. ACTH monitoring is equally as important for the other drug used to treat Cushing's (Lysodren). So if your vet is not conducting the proper testing, neither drug is safe for Duchess to be taking.

Marianne

[Roxee's Dad]

Oh Dear LabMom,

I couldn't agree with Kim or Marianne more. Without an ACTH Stim test, your vet is not only gambling with your pups comfort level, but with her life. I find it hard to believe a vet would prescribe any cushings medication without knowing how he or she is supposed to monitor it's effectiveness.

Is it possible he did the ACTH and maybe you just don't know. It's a usually a 2 hour test.

With the proper dosage, a cush pup's symptoms such as excessive appetite, excessive water drinking and excessive urination are usually relieved within the first 10 days or less.



My vet has told me that this treatment has failed. I need to know what to ask for next please!

He cannot know that it has failed without the test. I would either ask for a Stim test or find a more knowledgeable vet.