New diagnosis, concerns about Trilostane

[Orchid527]

Hi all, my name is Susanne, I’ve been reading posts on the forum for a while, but just signed up. My Boston Terrier Orchid has been having a tough past few months. She’s 9 years old, 17 lbs., and a rescue. Late last summer she tore her ACL and had to have surgery. During the recovery period she started to Cushing’s symptoms (always thirsty, always peeing) and the vet who did the surgery recommended testing. Her regular vet recommended against it, saying it might just be post-op anxiety and that we should focus on getting her leg better. But then the symptoms just accumulated: the shaved hair on her leg didn’t grow back, other hair got thinner, her skin seemed to get thinner, she got a potbelly, was always thirsty and hungry, was often trembling and her back legs were weak. She was waking me up every couple of hours to drink and go out (and I live on the third floor!). The only thing that didn’t fit with Cushing’s was that despite the potbelly, she has lost weight (she used to weigh 20 lbs.).

Anyway finally her regular vet prescribed Anipryl, because it was safe, and he was concerned about how the side effects of other Cushing’s treatments. But during the month we were waiting to see if that would work, I read about how limited its effectiveness was. So I took her to another vet who said all the clinical symptoms pointed to Cushing’s, and did an ACTH test, which came back positive. The results:

Pre-ACTH cortisol: 14.7 ug/dL
Post: 27.5 ug/dL

I have blood tests results but not I’m sure which are relevant. So the new vet prescribed Trilostane (15mg once daily). Orchid’s been on it for 3 days. The good news is that she stopped peeing so much and can sleep through the night. The bad news is that she’s really lethargic, weak, and dopey. She’d been getting more lethargic anyway—didn’t want to go on her usual walks—but now she doesn’t even want to walk down to the end of the block. She’s still got a good appetite and hasn’t (knock on wood) vomited, so the vet said to keep her on the Trilostane despite the lethargy. But I’m wondering what people here think. Is this a sign of too little cortisol, meaning we should stop the Trilostane? Is it possible that the reduced cortisol in the system has unmasked other problems? Any help most welcome!

[lulusmom]

I Susanne and welcome to you and Orchid.

I have manually validated your membership so it will not be necessary for you to respond to the email that was sent you for validation.

I'm sorry for the reasons that brought you here but I'm glad you found us. We're here to help in any way we can and we can better do that if you provide us as much information as possible.

The acth stimulation test is most definitely consistent with cushing's but since this test does not distinguish between pituitary or adrenal dependent cushing's, an abdominal ultrasound and/or an endogenous acth test is done to 1) validate the acth stim test; 2) to determine if pituitary or adrenal and 3) to check surrounding organs, including the liver, which is almost always enlarged in cushdogs. Did your vet tell you which form of cushing's Orchid has?

Can you round up the blood chemistry, cbc and urine tests and post just the high and low values, including the normal references ranges?

Vetoryl (trilostane) can drop cortisol like a rock in the first few day post dosing so it's not uncommon for a dog to feel lethargic and yucky. A cushdog is used to having these huge amounts of cortisol in their blood and then all of a sudden it's not longer there so they go through a bit of withdrawal. The dog usually adjusts in a few days.

It's necessary to always monitor your dog when on Vetoryl but it is even more important in the first two weeks. Signs that cortisol has dropped too low are no appetite, diarrhea, vomiting, extreme lethargy, wobbly and even unable to walk. There is a big difference between withdrawal and an addisonian crisis and I'm sure you would know the difference. If you think cortisol is too low, you need to contact your vet asap or get her to the vet asap.

Orchid's first acth stimulation test should be done no later than 14 days after starting treatment. Her electrolytes should also be checked at the time of any stim tests. You should give Orchid a small meal with her morning dose and make sure you get her to the vet for the test within 4 to 6 hours of dosing.

We'll be looking forward to hearing more about Orchid and seeing her test results. In the meantime, please ask any questions you may have.

Glynda

P.S. I forgot to answer your question about reduction of cortisol causing problems. The two most common conditions that are unmasked after treatment is arthritic/joint/spinal problems and allergies/itchies.

[Boriss McCall]

Hi Susanne.. Welcome to you & Orchid. I too have a 9 year old Boston. He just turned 9 in October & he started treatment this summer.

I hope your baby starts feeling better soon. Boriss has not had any bad side affects from the Trilo thus far. Hopefully it is just Orchid's body getting used to the meds & you will see good changes soon.

After a few days my dog was feeling better.. started playing with his toys again & not begging for food as much.

[Orchid527]

Hi Glynda,
Thanks for verifying me! The vet didn’t specify adrenal or pituitary; she had initially suggested an ultrasound but after the ACTH test she said that, given all the clinical symptoms, we should just start the Trilostane. I have 2 pages worth of blood work results. She tested normal in most but high in these:

Alk. Phosphatase 455 (range 10-150 U/L)
ALT (SGPT) 168 (range 5-107 U/L)
CK 499 (range 10-200)
GGT 26 (range 0-14)

Phosphorus 7.1 (range 2.1-6.3mg/dL)
Anion Gap 26 (range 12-24 mEq/L)
Reticulocyte 156 (range 10-110 K/uL)

Neutrophil Seg 86 (60-77%)
Auto Platelet 663 (164-510 K/uL)
Absolute Neutrophil 13612 (3000-11500/uL)

And these came out low:
Lymphocytes 6.4 (12-30%)
Eosinophil 0 (2-10%)
Absolute Eosinophil 0 (100-1250)

I don’t know what most of these mean.
Orchid is somewhat wobbly but she can walk. We’ve been giving her the Trilo in the evening with food; the vet said the time of day didn’t matter, but you may know more than she does. Thanks again!

[lulusmom]

Orchid is somewhat wobbly but she can walk. We’ve been giving her the Trilo in the evening with food; the vet said the time of day didn’t matter, but you may know more than she does. Thanks again!

Unless your vet is willing to accomodate you by staying late enough to do an acth stimulation test 4 hours after Orchid's evening dose, I would say your vet is very inexperienced with cushing's in general and most definitely not experienced with proper monitoring of Vetoryl treatment. Vetoryl has a short half life, with peak effectiveness as early as two hours after dosing. It usually begins to wear off any time after 8 hours so if you don't do the acth stimulation test at the optimum time, the results are going to be meaningless. ACTH stimulation tests are expensive so don't let your vet waste your money. You will need to switch Orchid to am dosing with a meal. You do that by withholding her evening dose and then restarting the following morning.

IMO your vet should have gone with her first instinct and done the abdominal ultrasound before starting treatment. If it were my dog, I would want to know what I'm dealing with. While the vast majority of dogs have a pituitary tumor, it is still possible that Orchid has an adrenal tumor and if she were to be a good candidate, surgery is an option. If it's not an option, I'd still want to monitor an adrenal tumor periodically.

Glynda

[Trish]

Hi Susanne
Welcome to the group, Orchids picture is adorable!! Good luck with getting her sorted, these smart angels will have you right in no time! A few of us have dogs with adrenal tumours, so I agree an ultrasound is important.
Trish xx

[lulusmom]

Yay, Susanne, you got your avatar up. Orchid is adorable in her festive wear. Red is her color for sure. :D

[Orchid527]

Thanks everybody, and Glynda, we'll definitely switch the Trilo to the morning. To be honest, given that we just spent ~$3K on ACL surgery, the cost of an ultrasound (not to mention possible adrenal surgery) was a concern. But I realize that this disease is expensive any which way.

[molly muffin]

Hello and welcome! I'm glad to hear that you are switching to a morning dose. You'll want her on morning dose for the ACTH test that you'll be having. Looks like you're also going to want to have blood test done at some point to check and see how those levels that are off are reacting now to the lowered cortisol and to make sure that something else isn't going on.
I'm glad you found us and decided to register. We have a great support group here and several bostons. So cute!

Sharlene and Molly Muffin

[Orchid527]

Hi all,
after a week on Trilo, Orchid's drinking and peeing much less and everybody's sleeping much better. Yay! The main concern is still her leg weakness. We think this might be post-ACL surgery pain and/or arthritis that was masked by all that cortisol. But just to be sure we're taking her in for her ACTH stim test tomorrow.

[molly muffin]

It can also take much longer for the muscle weakness to go away, if it does, than the other symptoms. Every pup is different but I do hope that Orchid's legs finally get better.

Sharlene

[Orchid527]

Hi all. The results from Orchid's second ACTH test came back. They were pre 5.4, and post 20.7 (the first test was pre 14.7, post 27.5). So the vet recommended we keep her on her current Trilo dose for now (15mg in the morning).
We got her tested only 8 days after she started the Trilo because we were concerned about her lethargy. The vet thinks it's arthritis, which makes sense especially since it gets worse when the weather gets cold and damp. Anyway, the vet has prescribed Metacam, but I'm reading other threads mentioning bad side effects from this. Any opinions or advice on alternatives? As I mentioned earlier, she had ACL surgery back in August, so some of the pain may owe to that.
Thanks much--Susanne

[GabbySue]

Ask your vet about Adequan injections for her leg. There are other medications for pain too like Tramadol
(which is on the Walmart $4 list for 60 tabs ,it's a huge savings!!! and Gabapentin(Neurontin) it is a med used for seizures but is routinely now prescribed for pain control, I have 2 dogs on both of those.
The Cox 2 inhibitors have less chance for side effects than other NSAIDS (Deramaxx /Previcox) but for my dogs that are taking any NSAID I also give a stomach protectant such as Pepcid (My JRT Gabby that weighs just under 10 pounds gets 2.5mg, so I split a 10mg tab in 4 peices) She tore her ACL too, the vet had her on an NSAID and some Tramadol,I also treated her with Cold Infrared Laser therapy, she is too small for a repair. She runs after squirrells like nothing ever happened!

Tiffany

[frijole]

Tiff is right - I used both adequan and tramadol for my elderly dogs. Had same deal where vet tried to prescribe metacam... I ended up returning it for refund. Kim

[GabbySue]

I will also say that every dog like people are different, some can tolerate one NSAID better than another. I've lost a JRT to complications from Metacam, nearly lost a Lab to Rimadyl, while I had another Lab do very well on Rimadyl for years and was on the study by Prfizer for once a day dosing, and others that have done well on Metacam. I can take a ton of Alleve, but give me Motrin and I bruise badly and get GI problems, I'm deathly allergic to Tramadol...

I personally use the smallest dose of NSAIDS and use the other drugs with better relief.
I buy my Adequan from Farmvet, they have the best prices.Just have your vet write a script for it and it will save you about half what they will charge you ($54 a bottle versus @$90)

Tiffany

[molly muffin]

Hi Susanne, Merry Christmas to you and Orchid. (although Orchid is way ahead of the game with that outfit! Love it :))

Have a safe and wonderful Holiday.

Hugs,
Sharlene and Molly Muffin

[jrepac]

Love Norman's X-Mas outfit!

Perhaps try some of the glucosomine based supplements for the arthritis; minimal use of NSAIDs is best for Cushpups, as they affect the liver. I used doggy aspirin from time to time w/mine, but only if she was in clear need of it. Daily use of glucosimine supplements and treats, over time, seemed to alleviate her arthritis. Much safer too.


Jeff & the Girls

[NoonelovesmelikeNorman]

Orchids outfit is so cute! Happy things are going better, less drinking and urination usualy equals more sleep for all which helps healing. Wishing you and Orchid the best Suzanne!

Norman just started his Trilostane, pill form, so I am able to break in half which I am going to start tomorrow.

Sharon and Norman

[Orchid527]

Hi all,
Orchid was doing really well for a few weeks, but then about a week ago she suddenly got very very lethargic. She was still eating fine, but had no energy at all. Meanwhile she has been steadily losing weight (last summer she weighed 20 lbs, now more like 16.5). And she's still losing hair.

So we took her in for a stim test and blood work yesterday. The numbers came back better than last time: pre 5.7, post 6.7. And the vet said her liver enzymes had improved. But she still recommended giving Orchid trilostane once every other day, to see if that helped with the lethargy. From what I've read on here, that's not a good idea. Any thoughts?

The vet also said what we were beginning to suspect--that she might have a brain tumor. Getting an MRI is not in the budget. So now we're not quite sure what to do next. It's hard to know how much she's suffering.
Susanne

[molly muffin]

How about adding in a liver supplement? that might help with the energy levels, not positive though.

Nope, every other day dosing is not good. It makes their body try to over produce on the days they don't have it and then non produce on the days they do, you are looking for a steady cortisol rate. Maybe look into twice a day dosing instead of once a day. This would actually be a split dose of possibly even a lesser over all amount than the once a day. However, the cost can go up with that as you are looking at buying more meds. I am always shocked that any vet would even suggest that as it goes completely against the recommendation of the manufacturer and every specialist that is out there. grrrrrr

Hopefully some of the others will be by soon to chip in with what they think.

hugs,
Sharlene and Molly Muffin

[Orchid527]

Thanks much, Sharlene. That's what I thought. If you or anyone else knows of any articles or blogs that specifically address the reasons why every-other-day dosing is a bad idea, could you send them to me? This could help convince our vet.
Thanks again,
Susanne

[SoggyDoggy]

Hi Susanne,

After having a quick read through your thread, I'm beginning to wonder if your vet actually knows what they are doing with any amount of confiedence. Having been in that exact situation, if at all possible, I would be asking for an immediate referral to an Internal Medicine Specialist if at all possible. I realise that means extra cost and trust me, I get it! Within the space of 3 months, I also had 2 lots of dental work, an ACL/PCL repair and cushings tests and diagnosis (I have two dogs, they took turns with the last two).

The suggestion of every other day dosing is a worry which would prompt my request. Sorry to be a downer here, but if you have to convince your vet, I would want more qualified advice.

I can say though that it has taken my non-cush boy Oscar about 3-4 months to fully get over his cruciate surgery, even now though, he still limps occasionally and doesn't place his full weight on his leg while standing. It is a time thing, they need to build the scar tissue to support the joint, and that takes longer in a cush pup, so be sure not to rush it. Doing too much too soon can actually set the recovery back even longer.

Sorry I can't offer much more help than that, but I wish you luck in getting everything sorted out.

Naomi.

[addy]

The vet also said what we were beginning to suspect--that she might have a brain tumor

Hi, I just wondered what leads your vet to suspect that? Does your pup have other symptoms besides being lethargic?

We have had a few vets advise members to do every other day dosing and I am just not sure where they are gleaning that information from as it is not logical from all we understand. New studies and recommendations are coming out that talk more about twice day dosing to keep cortisol more consistently lower and with Trilostane/Veotryl leaving the body so quickly, some estimate 8-10 hours, what would be the point and it seems that would be even harder on the dog.

Sorry you are having so much trouble.

[molly muffin]

I don't see where anyone talks about why you should do every day dosing specifically, so maybe someone else has a link to that. However, the Dechra website and the insert say once day due to Trilostane leaving the body in the time frame just mentioned by Addy. (8 - 10 hours)

Here are a couple links to the Dechra info:

http://www.dechra-us.com/Files/dechraUSA/downloads/Client%20Literature/Vetoryl%20Technical%20Brochure.pdf

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

http://www.dechra-us.com/Files/dechraUSA/downloads/Client%20Literature/Vetoryl%20Client%20Brochure%20-%20English.pdf

These are all pdf files.

This is where Dr. Peterson talks about the twice dosing
http://endocrinevet.blogspot.ca/2012/12/low-dose-twice-daily-trilostane.html

(Dechra also links to Dr. Pterson's blog as he is consider one of the top experts in the field.

Hope that helps and maybe some others will have some more links for you too.

Sharlene and Molly Muffin

[molly muffin]

Here is something interesting and I think this is maybe the blog that your vet should take a look at (Dr. Petersons, link above) is that while they discusee one a day dosing, twice a day, etc. They Never even give a thought to every other day, as it is just not feasible. The research is how to keep a dogs cortisol stable through out the day, it's not even possible with every other day to try to control the cortisol. :(

Sharlene

[Orchid527]

Hi all,
Thanks much for your support and tips. It's upsetting to realize the vet's clueless, but better sooner rather than later. We live in the Boston area (along with many Boston Terriers) so if we do decide to look for a specialist, it shouldn't be too hard to find one.
Addy: I think the reasons the vet suspected a possible brain tumor, whether in the pituitary or elsewhere, are the continued weight loss (despite her eating regularly), the normal blood and liver enzyme tests, and her overall demeanor of (as the vet put it) "mental dullness." She doesn't seem totally disoriented or walk into walls, but she is very spacey as well as sleepy.

[Squirt's Mom]

Hi Susanne,

The continued weight loss is a concern to me as is the lethargy. Lethargy is described as -


Lethargy is a state of drowsiness, inactivity, or indifference in which there are delayed responses to external stimuli such as auditory (sound), visual (sight), or tactile (touch) stimuli. Lethargy may also refer to the general malaise and decreased activity exhibited by animals that do not feel well.

http://www.petplace.com/dogs/lethargy-in-dogs/page1.aspx

While neurological issues can be one of the causes, there are 100's of other things that can cause these signs.

There are some fairly telling signs that indicate a tumor may be present in the brain causing problems, whether the tumor is Cushing's related or not - and they are not all related to Cushing's. Among them are -
*circling, not the circling they do before they lay down, but repetitive circling for no purpose
*pressing the head against furniture, your legs, the walls, etc,
*staring into space
*snapping at the air (fly biting)
*getting stuck behind furniture, in corners, etc.

We have a thread in the Everything Else section started by one of our members who's baby did have a macro and others have contributed to the thread over time with their own experiences. You can read through this thread and see if you are observing some of the same things they did. You can find the thread here -

Macro tumor thread
http://www.k9cushings.com/forum/showthread.php?t=3567

In a brief reading of your thread, I only saw results for the ACTH. Did Orchid have the LDDS? If there is any way possible, and I sooo understand how difficult it can be to find funds, I would want an abdominal ultrasound done. Not so much to confirm the Cushing's diagnosis or to determine the type but to see the condition of other organs like the liver, gall bladder, kidneys, stomach and others. The cause for the weight loss and lethargy may be found there....not in the med or in Cushing's. ;) You might talk to your vet (or the new one ;)) about working with you on payments if they do the U/S...not all GP vets have that capability, tho. But I would start looking into finding a way to get this test done.

And I would start that search for an IMS, plus a new GP vet that understands Cushing's and the drugs used to treat it, asap....like pick up the phone now asap. :) If the Trilo is to blame for what you are seeing in Orchid, the thing to do is lower the dose or switch to Lysodren, not give Trilo, which has a very short life in the body, every other day. A total waste of money and effort.

I just LOVE the avatar of Orchid! She is really stylin' there! :D

Hugs,
Leslie and the gang

[Orchid527]

Thanks for all your input. I've started to ask around about a Boston-area internal med specialist. In the meantime I'm wondering if it would be a good idea to stop the Trilostane, just to see if it helps with her lethargy. ?
Susanne

[addy]

Sounds like a good start, wishing you good luck with your stim tomorrow:D:D:D:D:D:D:D

We have had lots of stims this week;)

[SoggyDoggy]

Thanks for all your input. I've started to ask around about a Boston-area internal med specialist. In the meantime I'm wondering if it would be a good idea to stop the Trilostane, just to see if it helps with her lethargy. ?
Susanne

I would think that at this point if you have been giving the trilo every other day, that stopping it is not going to hurt at all, the good news is that it is a drug you can stop cold like that. Then you can compare how Orchid is off the trilo vs on it. Monitor her lethargy and see how she goes, obviously the weight is harder to monitor short term as it is not a sudden thing, but the more info you can gather, the better Orchid's outcome could be.

Having had an experience with an IMS though, I can say that it is a whole different ball game and I do highly recommend it if at all possible. To save yourself some money though, ask your vet to forward all of your blood test results, scans, whatever you have to the IMS you are going to see (you may even need you vet to write a referral) so you don't have to repeat things. Of course the IMS may want some updated bloods run, but it is good to start with a history rather than a cold slate. Then in consult, you can discuss all of the observations you have made during the treatments so far. As I said, the more info you can provide, the bette the possible outcome.

I'm sure there will be someone around who might be able to recommend an IMS in the Boston area, sorry I can't be of help in that.

Good luck!

[scoora]

Susanne-My Scoop has been diabetic for over 2 years. His weight had been steady at 21 lbs. for most of that time until he started with all his other problems in July. He then was 19 lbs. He dropped as low as 16.2 lbs. at one time according to the vets scale. I'm not convinced they got an accurate read on that one but he had been consistantly around 16.4-16.6 lbs. The other day he had a BG curve done and each time they did a blood draw they weighed him. All 5 times he was inbetween 17.2 and 17.8. That is the first time it seems he has gained something. One of the things the vet said in the beginning about the weight loss was that he could possibly have a brain tumor besides his pituitary tumor. He had an abdominal ultrasound done to look at a spot on his liver but that was OK and everything else in there was too. He also had an MRI done to look at his brain and ears. Saw his pituitary tumor and a mass in his ear which after he had surgery turned out to be infection. No other brain tumor. The vet said the weight loss could be because of his muscle wasting or from his diabetes. Orchid isn't diabetic is she?

[Orchid527]

Hmm. She hasn't been tested for diabetes for several months, if at all (I was out of the country during one stint of vet visits). But now I'm wondering. I hadn't realized there was such an overlap of symptoms.

This sounds like another reason to lay off the Trilostane for now. Fortunately I've discovered that one Boston vet hospital has an entire team of IMSs, including a few who specialize in endocrinology.
Thanks for this!

[molly muffin]

Oh yay that sounds very good! An entire team of IMS, that's like, the dream team! Now get your vet to send over all the stuff to them, so nothing has to be repeated and your off and running.

:)
Sharlene and Molly Muffin