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Truman's Mom
03-11-2017, 09:52 AM
Hi all,

I have been lurking for over a year, have started to post several times, but just never "pulled the trigger". Now I am overwhelmed, frustrated and scared enough to just do it!

Truman is an 8.5 year old St Bernard mix and the love of my life (my husband knows this and has grown to accept :) ) He was diagnosed with Cushings last September and put on Trilostane, 90 mg 2x per day. (He is 115 lbs) His symptoms were excessive panting, drinking lots of water, increased appetite and LOTS of shedding (like coming out in clumps!). He was also urinating pretty frequently, but at that time he was not having accidents in the house.

Initially his symptoms may have subsided but not significantly. He was re-checked after a month or so and the vet said his numbers were perfect. She said we should recheck in 6 months. There wasn't any noticeable change until a month or so ago. He started having to go out in the middle of the night pretty much every night, drinking a lot of water, insomnia, restless etc. Still no accidents in the house at that point. We had him rechecked last Saturday, again his numbers were perfect, like a 2.8. (I don't have a good grasp on what the numbers mean, but am realizing that I probably need to educate myself). Starting Tuesday, he has had an accident in the house every day, sometimes after only a few hours. He water intake has increased as well and we have not wanted to take away his water during the day because the vet said he could dehydrate easily.

I am taking him back to the vet today for more blood tests and a urine test. She said it could be a bladder infection. After some research, I'm wondering if he could be diabetic.

I am just really discouraged and frustrated...hoping someone here has some thoughts or suggestions. I know you will want his lab results which I will try to get today, although I'm not quite sure what to ask for! At any rate, I needed to start somewhere so here it is.

Thanks for everyone's input on this site, it has been very helpful!

Joan2517
03-11-2017, 10:46 AM
Welcome to you and Truman. You're vet is right, do not withhold the water!

If you could post all Truman's blood work, only the highs and lows with the reference ranges, that would help members more knowledgeable than I am. I wasn't on this journey long and never did get the hang of what they mean.

Harley PoMMom
03-11-2017, 11:07 AM
Hi and welcome to you and Truman!

I am so glad that you have finally come out of the shadows and created a thread for your dear boy and we will do our best to help in any way we can. And, yes, getting copies of all tests that were done on Truman and posting any abnormalities would be real helpful to us.

Now, a bit of information regarding those ACTH stimulation results, there are two numbers: the first is called the pre, this is the first blood draw taken and tells what his resting or baseline cortisol level is; the second draw is known as the post number and it very important because it shows how much cortisol those adrenal glands had in reserve, if this number falls too low a supplementary cortisol replacement is needed such as prednisone. You really don't want that post number to drop lower than 2 ug/dl.

Another important blood test to perform is a CBC (complete blood count) and chemistry panel. This shows how the electrolytes, liver, kidneys, among other things, are doing and this is also where the glucose level is checked. If drinking and urinating have increased than testing for diabetes should be done along with getting an urine sample to have cultured to see if there is an UTI brewing.

The Trilostane dose Truman started out at is much higher than what is recommended, it is now advised that the dose should be 1mg per pound of the dog's weight and for Truman that would of been a dosage strength of no more than 90 mg once a day. And even though his last ACTH stimulation post number was within the guidelines that are published it may have dropped too low, which is known as Addison's, which is the opposite of Cushing's, and therefore that supplementary glucocorticoid is needed such as prednisone.

The vet is correct in that a cushdog has to have water available at all times so I am relieved to see that his water has not been restricted.

Some questions that I have are; is he getting his Trilostane with a meal and are those ACTH stimulation tests being done 4-6 hours post pill? It is vital that these protocols are followed because if not the risk of overdosing is more likely to happen. Was Truman diagnosed with the pituitary or adrenal form of Cushing's? Is he taking any other supplements/medications/herbs?

So, this is where I would start, I would have a chemistry/CBC blood panel performed along with an urine culture. The reason I am recommending an urine culture is that generally cushdogs have diluted urine and if just a regular urinalysis is done it may not pick up bacteria that is hiding in that urine. An urine culture and sensitivity test has a much higher chance of detecting any bacteria and then the appropriate antibiotic can be prescribed.

I sure am sorry for the reasons that brought you here but so glad you found us. And remember we are here for you and will walk this journey with you and Truman. if you have any questions please do not hesitate to ask them.

Hugs, Lori

Truman's Mom
03-11-2017, 11:14 AM
Thank you so much for your replies. I am taking him for the blood and urine test this morning and will ask that they do a urine culture. Another question...does the trilostane dosage change if it is compounded?

The test that was done last week was the four hour test. We dropped him off in the am with no breakfast, but they did have us give him the trilostane.

Joan2517
03-11-2017, 11:24 AM
Thank you so much for your replies. I am taking him for the blood and urine test this morning and will ask that they do a urine culture. Another question...does the trilostane dosage change if it is compounded?

The test that was done last week was the four hour test. We dropped him off in the am with no breakfast, but they did have us give him the trilostane.

The trilostane must be given with a meal for it to be fully absorbed into the body.

Harley PoMMom
03-11-2017, 11:25 AM
Thank you so much for your replies. I am taking him for the blood and urine test this morning and will ask that they do a urine culture. Another question...does the trilostane dosage change if it is compounded?

If one is just switching from the brand-name Vetoryl to compounding the Trilostane than the dosage can not be one that Dechra, makers of Vetoryl, manufactures. So say, if a dog is taking 20 mg of Vetoryl than the compounding Trilostane would need to be either 19 or 21 mg.


The test that was done last week was the four hour test. We dropped him off in the am with no breakfast, but they did have us give him the trilostane.

Depending on the stimulating agent used the ACTH stimulation test takes no more than 1 or 2 hours. And the Trilostane HAS to be given with a meal to be properly absorbed. Since these two very critical protocols were not followed I am very worried that Truman's cortisol has dropped too low which can be life threatening. I do suggest having his cortisol levels rechecked to make sure he is not in an Addison's crisis.

Is his appetite ok? Any vomiting or diarrhea?

Hugs, Lori

Truman's Mom
03-11-2017, 11:31 AM
No vomiting or diarrhea. We were told not to give breakfast, but just give the trilostane with a small amount of food.

Harley PoMMom
03-11-2017, 11:37 AM
I'm being lazy here and pasting a reply from me to another member regarding giving the Trilostane with a meal :o


If this were me, I would proceed with the ACTH test tomorrow especially knowing that the previous ACTH stimulation tests were not performed according to the Vetoryl/Trilostane monitoring protocol that is published. I am including articles that state that Vetory/Trilostane must be given with a meal, this first one is the "Vetoryl Client Brochure" which Dechra publishes, (Dechra is the maker of Vetoryl):

Vetoryl Client Brochure (http://www.animalhealthinternational.com/animalhealthinternational.com/media/Animal-Health-International/Training/Dechra/VetorylClientBrochureSpreads4_20HighRes.pdf)

On page 6 of that brochure:


How do I give VETORYL Capsules to my dog?

Give VETORYL Capsules with a meal in the morning so they can be effectively absorbed. Administration in the morning is critical so your veterinarian can perform the monitoring test at the appropriate time after dosing.

This second excerpt is from an article on Dr. Mark Peterson's blog (Dr. Peterson frequently contributes to Dechra's online continuing education for veterinarians) and is titled: What's the Best Protocol for ACTH Stimulation Testing in Dogs and Cats?


Remember that the ACTH stimulation test is the most useful test for monitoring dogs being treated with trilostane (Vetoryl) or mitotane (Lysodren) see my blog entitled, Diagnosing Cushing's disease: Should the ACTH stimulation test ever be used? Both medications are fat-soluble drugs and must be given at time of meals, or the drugs will not be well absorbed.

With trilostane, it’s extremely important to give the morning medication with food, and then start the ACTH stimulation test 3 to 4 hours later.

Fasting these dogs on the morning in which the ACTH stimulation test is scheduled should be avoided since it invalidates the test results.



http://www.endocrinevet.info/2011/03/whats-best-protocol-for-acth.html

You can print these articles for reference to prove to the vet and staff that they are wrong in directing pet parents to fast their dog when monitoring Trilostane with the ACTH stimulation test.

Hugs, Lori

spdd
03-11-2017, 11:38 AM
I just want to jump in here not only to welcome you to the forum but to give you some information. The experts on here literally saved my dogs life, all due to wrong testing and information given to me by the life long vet I had for "mah boy" and the veterinarian teaching hospital here in Ontario Canada... so my point is, please pay attention to the advice you get here from the experts. In my opinion they have far more experience then any vet I had taken my fur baby too.... and because of them I got another 2 years with Keesh. You cannot get any better advice, knowledge and care for your boy then you can get from here. Wishing you much luck and hoping your baby is better soon.

Truman's Mom
03-11-2017, 01:04 PM
So trying not to panic here, but have asked my vet to call me this afternoon so I can talk to her about how the test was performed. They are expensive and I hate to keep repeating them, but I will do what I have to do for Truman. So here are his lab results:

July 2016 Low dose DEX Test
Cortisol Sample 1) 10.2 high
2) 2.4 high
Sample 3) 4.7 high
Sept 2016 ACTH (after starting Trilostane)
Cortisol sample 1) 1.7
Sample 2) 3.9
March 7, 2017 ACTH
Cortisol sample 1) 2.4
Sample 2) 3

For a little background, when our journey first started almost 2 years ago, I was seeing a different vet in the same office, mine was on maternity leave at the time. I was seeing one of the owners, who you think would be more experienced. I was convinced that Truman had cushings, but he refused to believe me. I also got his CBC results from Nov 2015 and his Alk Phosphate was 3101, which is extremely high according to the results. Everything else was normal on these labs. I hope all of this makes sense to someone out there! :confused:

Today they took blood and urine samples. They will do a complete CBC, urine culture and urinalysis.

Thanks again for your support!
Annie

labblab
03-11-2017, 02:16 PM
Hi Annie, and welcome from me, too! Thanks so much for posting all this additional info, and I think you can take a step back from panic mode in terms of the fear of Addison's. As the others have said, future ACTH tests should be performed after the trilostane has been given alongside a full meal. Many vets seem to be confused about this, but your vet can call Dechra directly (maker of Vetoryl) for confirmation of this protocol. So yes, it is entirely possible and even likely that Truman's cortisol may regularly drop even lower on days when he is fed breakfast along with taking his med. But with a baseline reading of 2.4 and a post-ACTH reading of 3.0, I do not believe he is actually in current crisis due to low cortisol. It is possible, though, that when taken with food, his trilostane dose may regularly drop him somewhat lower than he's comfortable with. I don't know that you have to rush to repeat another ACTH immediately. But if you don't come up with any answers from this additional testing and Truman shows no improvement soon, I'd probably lean on the vet to perform a repeat -- at reduced cost!-- following Dechra's stated protocol. And even when test results are uniformly within range and a dog is stable, I think six months is too long a time to wait between monitoring tests. Dechra recommends testing at least every three months for safety's sake.

The fact that his overt symptoms had never really resolved, though, and have now worsened even with a cortisol reading at this level, is indeed puzzling. I think you are right to wonder about diabetes, and thankfully, that can be ruled in or out pretty quickly with today's tests. And before speculating further, let's see how the other results turn out, as well.

One sidebar question: have you already switched between Vetoryl and compounded trilostane during Truman's treatment? I'm just wondering based on your dosing question.

Marianne

Truman's Mom
03-11-2017, 03:27 PM
Thanks, Marianne. I feel much better after reading your reply! We have only had him on the compounded trilostane. I just wasn't sure if the dosage on the compounded version was different because someone mentioned that his dosage was high. We have stayed at this dose because his test results have come back within acceptable range.

It's interesting that you say 6 months is too long. I asked the dr about the frequency of testing in September after the first post trilostane test and she said 6 months was fine. I will ask her about that as well or just schedule the next one in 3 months. She is hoping to have the CBC and urinalysis results tomorrow. At this point, I'm not sure what to hope for except something that can be cured or treated.

Thanks again, I feel like I can relax a little more now. :)

judymaggie
03-11-2017, 04:31 PM
Hi -- I wanted to add my "welcome" to you and Truman! I just wanted to add a couple of thoughts re vets being experienced with treating Cushing's. My vet has been practicing for many years and I trust him implicitly with my dog's care. That said, I learned (unfortunately, from another client whose dog passed away from Cushing's) that he was not following accepted protocols when treating his Cushing's patients. Although my previous beagle was also a Cush pup, due to advanced liver disease, we never started her on Vetoryl or Lysodren so I was not aware of his practices at that time. When it was time to start treatment with Abbie, I printed out the protocols and articles written by endocrinology experts and basically told him what I was comfortable with in terms of testing and dosing. He is used to me giving him articles so this was really no different. He is aware that I participate in this forum but I stay away from passing on info from members. I think he, and probably most vets, respond better to other vets' guidance. It is my hope that he has taken what he has learned in treating Abbie and has applied it to his other Cushing's pups.

This is just my experience -- hopefully, your vet will be open to learning!

labblab
03-11-2017, 04:34 PM
Also, here's a link to Dechra's U.S. Product Insert for Vetoryl. I think you'll find a lot of helpful info there, including monitoring testing recommendations.

http://www.dechra-us.com/Admin/Public/Download.aspx?file=Files%2fFiles%2fProductDownload s%2fus%2fvetoryl-5mg-pack-insert.pdf

Marianne

Truman's Mom
03-11-2017, 07:26 PM
Don't know if it's important, but Truman is also taking Rimadyl, a glucosamine supplement and gabapentin in addition to the Trilostane. We discovered when he was just over a year, that he had pretty severe hip displaysia on both sides. He had a total hip replacement on one side when he was 2. He has done extremely well with one good hip for a long time, but in the last few years, arthritis is setting in plus he is just a big boy. At any rate, we've tried different pain meds and at one point a few years ago, he was put on steroids for a pinched nerve. He was not on them for very long, but I think this is when the cushings kicked in. I don't know if that is what caused it, but that is when the symptoms started. He can't take tramadol because it makes him anxious. We are at a point where I'm not sure how well his pain is being managed and I am considering trying cannabis.

Sorry to keep adding to the story, but he is a bit complicated.

labblab
03-12-2017, 10:19 AM
Thanks again for these additional details. No need at all to apologize-- the more info we have, the better! I'm very sorry that Truman has these orthopedic issues to contend with, as well. I understand how hard it can be to figure out the best solution, as my husband and I just had to put down our beloved nearly 12-year old Lab last summer due to severe hip dysplasia and other orthopedic degeneration. Assessing the pain level can be soooooo challenging because dogs can be so stoic :o.

Anyway, knowing that Truman has been taking a NSAID like Rimadyl increases my desire to see the results of yesterday's testing. Although you didn't mention it, I'm assuming the vet is checking a full blood chemistry panel in addition to the CBC (cell counts). The chem panel is the one that will test glucose level (for diabetes), T4 for thyroid level, and also key markers for kidney and liver function. Those markers are especially important for a dog taking an NSAID long-term. And last but not least, you will also be able to make sure that key "electrolytes" such as potassium and sodium are in proper balance.

Cortisol is only half the equation when it comes to Addisonian concerns. Trilostane also has the ability to lower aldosterone, the adrenal hormone that controls the balance of sodium and potassium. If that balance gets out of whack, severe issues can result. That's why it's very important that the basic blood chemistries also be checked periodically alongside the monitoring ACTH tests. So all in all, there will be a lot that we'll be interested in seeing in terms of those results today.

Marianne

Truman's Mom
03-12-2017, 11:04 AM
Thanks again, Marianne...you and others have been so very helpful. Yes, they are doing a full panel so we should have all of the results you mentioned. When the dr calls, i will ask if she can email me the results so I can share all of the numbers. She knows I do a lot of research on my own although I haven't mentioned this forum yet. Many in the medical profession don't like it when patients/advocates take matters in their own hands. My daughter is a nurse and she hates it when I starting googling medical issues. She and the doctors she works with caution their patients about information on the internet. When it comes to my dogs, I can't help myself. :o I lost a boxer to cancer years ago and if it weren't for my persistence, we may never have known what it was that was making her so sick.

Yes, Truman's orthopedic issues have been challenging over the years and it's exacerbated by his size. I am also concerned because occasionally he stumbles. At first I thought it was clumsiness but after reading several threads here, I wonder if it's related to the cushings. Although I don't want to get ahead of myself.

Thanks again and stay tuned...
Annie

labblab
03-12-2017, 11:20 AM
Yep, medical professionals can be very wary of folks utilizing the internet. There's certainly a lot of "junk" out there, it's true. But the power of the internet can also be staggering in terms of the potential for self-education. I can be personally obsessive when it comes to research ;), and the results can be quite surprising. In the cases of two friends diagnosed with cancer, I actually came up with important treatment options prior to them ever being mentioned by their quite well-known oncologists! I printed off the research, and they took them in to their docs who both said something like, "Yes, those are protocols that bear consideration," and both ultimately ended up being pursued. Seriously?? It's not like I'm a genius or anything. It's just the fact that an enormous body of info is now available out there on the internet, and nobody is as eager or focused on your own health or that of a loved one as are you, personally!

I truly believe that knowledge is power. And we live in an age when a remarkable amount of knowledge is readily available.

Marianne

Harley PoMMom
03-12-2017, 11:27 AM
Some of our members have tried Adequan shots for their arthritic dog and it seems to help. Fish oil, especially wild salmon oil, has anti-inflammatory properties. I found this article to be informative regarding canine arthritis and treatments: http://www.whole-dog-journal.com/issues/10_3/features/Canine-Arthritis_15910-1.html

We also have a thread where natural anti-inflammatories are discussed: Joint support supplement (http://www.k9cushings.com/forum/showthread.php?t=5005)

Here's a link with info regarding Adequan: http://www.fda.gov/AnimalVeterinary/Products/ApprovedAnimalDrugProducts/FOIADrugSummaries/ucm116139.htm

I'm also including this link to an article, regarding arthritis, on the Dogaware site that lists medical and other alternative therapies: http://dogaware.com/health/arthritis.html

Hugs, Lori

PS..Truman sure is a handsome boy!

molly muffin
03-12-2017, 04:04 PM
Hello and welcome from me too. :) The others are mark on with their comments so I won't go into anything else as I think that we need to wait on test results to see if there are any changes. I'm thinking main things to look out for on those tests are of course diabetes, thyroid, kidney and liver. (liver due to being on nsaids for awhile so always keep an eye on that)

I had a two gp vets, an internal medicine specialist, ophamalogist, neurologist for my dog, and I always found that saying internet, could make them crazy LOL, but if I printed out manufacture (like the Dechra brochure) and specialist opinion and written papers, they responded well. My IMS was already right on target with protocols, but one of my general practice vets not so much. (who is dechra? uh, the manufacturer of the medicine you are prescribing!)

Anyway, welcome to the forum and we'll all be awaiting test results!

Truman's Mom
03-12-2017, 07:32 PM
So most of the results are in...

Urine is very diluted, but no protein and no glucose. Ph is a little high at 7.5, but she is not concerned at that level. The culture will take a few more days.

Blood test, nothing is standing out to her. Liver and Kidney values are good, although Alk is still high at about 3000, normal is 5-150. T4 is also low at .7, calcium is slightly high at 11.9 (again she is not too concerned about that).

Because he is a bit complicated, she is recommending a IMS, who is here in town, at least for a consultation. She suggested maybe an ultrasound, but said if we decide to go to the specialist, we should wait and him do it. It sounds like this is our best option at this point, unless someone here has another suggestion.

And thank you, Lori! Truman is handsome and very photogenic...and a bit of a ham! He loves to have his picture taken!

Truman's Mom
03-13-2017, 02:24 PM
Another question...is it ok to give him ice cubes instead of a full bowl of water when we are not home? I went home mid-day today to let him out and the bowl was dry.

I do this at night and it seems to work well, he crunches on the cubes throughout the night instead of drinking the whole bowl at once.

Squirt's Mom
03-13-2017, 04:28 PM
As long as that provide him plenty of water I don't see why not. Our cush babies just can't go without water because of the amount they pee. They have to stay hydrated....of course a dry bowl won't help with that for sure! :D

labblab
03-13-2017, 05:26 PM
If you're talking about leaving him alone over the course of several hours, I'd think it would be better to leave additional bowls of water. The amount of liquid supplied by a bowl of melted ice cubes is far less than the same bowl originally filled with water. Ice cubes and ice chips are actually given to people in hospitals when water intake needs to be restricted, but they are uncomfortable from dry mouths and the sensation of thirst. The moisture from the chips gives them some relief from that discomfort, but keeps them from ingesting a lot of liquid. If the worry is dehydration, though, rather than limiting fluid intake, I'd think you'd want to make sure there was plenty of genuine water available.

Marianne

molly muffin
03-13-2017, 09:29 PM
Yep, I'd go with the extra water bowls too. He's a big boy and probably can go through a lot of water.

Well that is good news about the glucose being fine. Could be the thyroid being a bit low. When do you have the appointment with the IMS?

Truman's Mom
03-13-2017, 11:03 PM
Our appointment is on Wednesday morning. Yes, thyroid is low...although she said it was not terribly low. I'm not sure what to think, it just seems like all of these numbers are a big confusing puzzle and I'm hoping the ims can put it all together! It's so hard when they can't tell you how they feel. Although he had a really good day today...no accidents in the house, but we came home twice to let him out. The problem is, our schedules won't allow us to do that every day. He seems very happy today and not panting as much as usual. Some days he just pants so hard, it breaks my heart because I don't know if it's because he's in pain or if it's the cushings or it he's just hot. My husband thinks I obsess over him, which I probably do, but I can't seem to help myself...or him. :(

Joan2517
03-14-2017, 11:17 AM
We all obsess over them here. Once your baby is diagnosed with something, you start watching for every little sign; you're on guard all the time; they can't tell you, so you pay more attention.

For me, every little thing puts me over the edge. The whole week before my Lee died, we were back and forth to the vet because I knew something was off, but they kept telling me that she looked great for a 15 year old dog. it drove me crazy that no one could see what I was seeing and feeling.

The night Lena died, my husband made me feel like I was imagining things and she seemed fine even though she was having trouble breathing, but I knew she was not and we rushed to the Emergency Clinic for the second night in a row.

Now of course, I obsess constantly over the rest of them and I don't take anyone's word. I trust the people on this forum more than I trust my own vet. I ask questions here first and then go with whatever knowledge I find here or that I have googled.

Whiskey's Mom
03-14-2017, 11:38 AM
I agree with Joan, I have obsessed and analyzed Whiskeys every move since our saga began. Now we are near the end, and I'm still doing it. I also trust the people on this forum, they are amazing. Truman is such a handsome guy and I love his name. I do understand how you feel, the day to day changes and always wondering how they really feel. Our poor babies.

Truman's Mom
03-14-2017, 03:17 PM
Thank you all for your support, it means a lot! At least I'm not the only one who's husband thinks she's crazy! :). We know our babies better than anyone and it's frustrating when even the doctors won't listen when we tell them that something's wrong. If the numbers are good, their job is done.

Truman came to me at a very painful time and he made me smile again. He continues to make me smile every single day, no matter what. Even when he's not feeling well, he always manages a tail wag when he sees me or hears my voice. I know all of us here feel this way about our babies.

I'm sorry that any of us are on this journey, but it's the price we pay for love and it's so worth it!

Thanks again. It's comforting to know there are others out there who understand.

Whiskey's Mom
03-14-2017, 06:56 PM
I couldn't have said it better myself. Whiskey has been with us through so many milestones in our lives- happy and sad. And we can never repay these pups for all that it means to have them by our sides with unconditional love.
Oh also, My husband KNOWS I'm crazy!

Truman's Mom
03-15-2017, 11:24 PM
Hi all,

We had our appt with the IMS today and he performed an ultrasound. The results were good, I guess. He did not see any tumors, kidneys looked good, liver and adrenal glands were "subjectively" enlarged, which is said is normal for "pituitary dependent hyperadrenocortism". He said there is a chance that since his ACTH results were ideal, but the clinical signs and severely elevated ALKP still present, it could be something unrelated to the Cushings. He mentioned early kidney disfunction and diabetes insipidus, but the tests for those are not conclusive. He thinks that Truman may not be responding to the Trilostane. He said the 2 best options to start with, the safest would be to try a different pharmacy who uses a different source for compounding the Trilostane. He said there is less than 50% chance that this would be effective. The other option is to try Lysodren.

I am very nervous about Lysodren because i have read some horror stories about it, but I am going to look for more info on this forum. But I am curious to know if anyone here has ever heard of a switching sources for Trilostane and that making a difference?

It seems so complicated and scary. I'd love some feedback and advice on this.
:confused:
Annie

molly muffin
03-16-2017, 06:16 PM
There are different compounding pharmacys and it is possible that a different sourced trilostane could make a difference. Many of our members use Diamondback and they have a good reputation. There are others though that members use, so there is always a chance.

Lysodren after a 30 day washout from the vetroyl is also a possibility. If used appropriately it is fine, as any medication, the vet has to be familiar with it, how to use and what the protocols are that are involved in it. It's different and works differently than vetroyl. It basically erodes the outter cortex of the adrenal gland. You want to take that down just enough so that not as much cortisol is being produced.

Since his ACTH tests are good though, I'm not sure that switching is a great idea. He has responded to the trilostane if his ACTH is good.

Truman's Mom
03-16-2017, 11:13 PM
That's the confusing part. His ACTH results are perfect, but his symptoms are still present. That is the reason for the switch. The hope is that trilostane compounded from a different pharmacy may make a difference.

Has anyone ever heard of Stoke's pharmacy out of New Jersey?

Squirt's Mom
03-17-2017, 11:07 AM
Diamondback out of Arizona is your best bet. ;)

Carole Alexander
03-17-2017, 12:16 PM
Hi and welcome from me too. I've read through your thread and am curious about the "bad" clinical signs. Is it only or mostly (and I don't say that lightly) the PU/PD? I think you mentioned stumbling also. But, otherwise is Truman mostly his happy interactive self? My dog, Skippy has been mostly on Vetoryl for almost four months and has never returned to being an energetic playful dog; he is 12 but a Yorkie mix who was full of life pre Cushing's. However, his cortisol is still not under control (9 to 13 post stim). They continue to look for other underlying disease and another big look is scheduled for next week with a new IMS. I think you are right to try another compounding pharmacy or maybe actual Vetoryl for a period. But switching meds when Truman's cortisol is under control seems like grasping at straws. Hang in - I know too well how frustrating this is.

Carole Alexander
03-17-2017, 12:24 PM
If you search this forum using keywords like Trilostane/Vectoryl to Lysodren, threads will pop up of folks who have switched. Remember though, every dog is different.

Truman's Mom
03-19-2017, 12:42 AM
Hi all,

Does anyone else give their dog Rimadyl while treating for Cushings? I spoke with a woman today who had a Cushings dog and the first thing her vet told her was to discontinue Rimadyl immediately. The reasoning is the high cortisol level acts like a steroid and it can be very damaging on the liver. My vet did not tell me that and I'm wondering if that could be contributing to Truman's continued high ALKP level. According to the ACTH, his cortisol is right where it's supposed to be, but his ALK level is still at 3000.

Looking for insight....thanks!
Annie

Truman's Mom
03-19-2017, 01:42 AM
As for his clinical symptoms, it's drinking, urinating, heavy panting and stumbling (back legs giving out). What's strange is that some days he is his normal, happy self, others he barely wants to move. I realize that some of this may be normal aging, it's just so hard to tell.

The pharmacy that the doctor is using for the new prescription is called Stoke's out of New Jersey, but I'm concerned because it is not on the list of accredited pharmacies. Has anyone ever heard of it?

This is SO confusing and frustrating! :(

labblab
03-19-2017, 09:49 AM
Hi all,

Does anyone else give their dog Rimadyl while treating for Cushings? I spoke with a woman today who had a Cushings dog and the first thing her vet told her was to discontinue Rimadyl immediately. The reasoning is the high cortisol level acts like a steroid and it can be very damaging on the liver. My vet did not tell me that and I'm wondering if that could be contributing to Truman's continued high ALKP level. According to the ACTH, his cortisol is right where it's supposed to be, but his ALK level is still at 3000.

Looking for insight....thanks!
Annie
Hi again, Annie. You'll see that I've merged your new question into your original thread. I understand why you were probably wanting to highlight the topic by placing it in a new thread. However, in discussing painkillers, I suspect we'll be touching on some issues that are specific to Truman and it's therefore better to have all the replies consolidated here.

For instance, in looking back through your thread here, I better understand the reasons for the rimadyl -- Truman's surgery and hip dysplasia, the onset of arthritis, and his intolerance to tramadol and certain other painkillers. Pain control sounds like a genuine quality of life issue for you guys, and therefore you may end up assuming certain risks in order to keep him comfortable.

It is true the the combo of NSAIDS (such as rimadyl) and steroids (including cortisol) is not a great one. It can leave a dog more vulnerable to GI bleeds/upsets, and liver and kidney damage. However, my personal thought is that in terms of Cushpups, the risks are greater when the Cushing's is not being adequately treated and cortisol levels are abnormally elevated. Once cortisol is well-controlled, I would think the special risks associated with Cushing's would decrease, and you would be encountering risks similar to other dogs who are taking NSAIDS on a longterm basis. Which is to say, all those same risks are also present for all dogs, but without the extra vulnerability of the steroid.

I do believe that some of the newer NSAIDS such as previcox and metacam are thought to be generally safer than older meds such as rimadyl. But a dog taking any NSAID needs to be monitored carefully. And it sounds as though you've already tried other meds without equal success. I was also going to suggest tramadol as a safer alternative, but apparently Truman didn't tolerate it well, either.

Since you say that Truman's cortisol levels are within desired therapeutic range, I would think you are somewhat neutralizing the extra risk associated with Cushing's. And if the rimadyl is necessary to keep him comfortable, then I'd probably shoulder the risk and stick with it if you simply can't find effective alternatives. But do bear in mind that I'm not a vet, so I'm really just brainstorming here, myself.

Marianne

Truman's Mom
03-19-2017, 09:59 AM
Thanks for reply, Marianne. I'm just trying to figure out why his ALK levels are still so elevated when the cortisol is where it should be. The dr seems to think he may not be responding to the Trilostane the way he shoule, which is why we are trying a different compounding pharmacy. But i just wondered if it could be the Rimadyl that is causing it.

Also, has anyone heard of Galliprant? It's a new NSAID that is supposed to be easier on the liver and kidney. If that is true, it seems like this may be a better option with his Cushings.

After reading so many different stories here, it seems so many of these pups have other complications to consider!

labblab
03-19-2017, 10:04 AM
I guess the rimadyl may be contributing to the ALKP. How are other more specific liver markers doing (like ALT, GGT)? Bear in mind that, for some Cushpups, liver markers just never totally normalize again even after treatment has been instituted.

labblab
03-19-2017, 10:05 AM
Also, no, I'm afraid I've never heard of Stokes. Do you come up with any info or reviews when you Google them?

Truman's Mom
03-19-2017, 10:23 AM
His other liver numbers are well within normal range, it's only the ALK that is still extremely elevated. It's at 3000, when the normal range is 5-131.

As for Stoke's, the only reviews I have been able to find are on their Facebook page and they are mostly good. I was just concerned because they are listed as accredited by the Pharmacy Compounding Accreditation Board. This may or may not be a big deal so I thought I would check here to see if anyone had used or heard of them.

lulusmom
03-19-2017, 01:51 PM
Hi Annie and a very belated welcome to you and Truman.

I also am not familiar with Stokes Pharmacy. I am a stickler for doing due diligence and always make sure that no warning letters have been issued by the FDA as a result of their inspections. I did find an FDA inspection report and warning letter on record for Stokes Pharmacy, noting deficiencies; however, it appears that with an appropriate response from the pharmacy, the FDA has closed their books on the matter. For you or any other member who would be interested doing their own due diligence on compounding pharmacies, the url is https://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/PharmacyCompounding/ucm339771.htm

I just read your thread and as usual, you have been provided with some really good guidance but I wanted to add a few comments and as a few questions about Truman's unresolved symptoms and persistent high ALKP.

Rimadyl can cause a myriad side effects but so can other NSAID's. I do agree with Marianne that because the more liver specific enzymes, i.e. ALT and GGT are normal, I'm not sure Rimadyl is causing a direct insult to the liver. The unfortunate truth about alternatives to NSAID's is that they usually aren't nearly as effective. If I were in your shoes, I would most likely switch to Metacam as I have had very good experience with both my cushdogs and many shelter rescues with disc and joint disease. My dogs' internal medicine specialist felt it was less likely to cause serious side effects. That's just my two cents worth.

An enlarging pituitary macrotumor can cause a deficiency in anti-diuretic hormone (adh), aka vasopressin, secreted by the pituitary gland which could cause persistent PU/PD, despite excellent control of cortisol. You might want to ask your vet about that. If your vet feels that's a possibility, you could try a trial of desmopressin acetate which is a synthetic form of vasopressin. If Truman has an adh deficiency, he should respond to the desmopressin rather quickly.

With respects to the occasional stumbling, that could be due to Truman's joint disease or it could be a neurological issue, which would not be uncommon with a pituitary macrotumor. Have you observed any weird behavior such as staring off into space, circling, becoming detached from the family or appetite issues?

Panting is a symptom that overlaps with many diseases/disorders. In cushdogs, it is believed to be caused by a combination of muscle wasting, redistribution of fat to the thoracic area and a general sensitivity to heat due to the many metabolic functions that high cortisol messes with. In my personal experience with my own cushdogs, this symptom took many months to resolve with treatment. While cushing's doesn't usually cause obesity, I've seen many overweight dogs here. My first cushdog was overweight because I free fed and didn't realize she was sucking up the kibble while I was at work. Panting is definitely a symptom I see at the top of the list of symptoms experienced by overweight dogs so can you tell us if you think Truman is at a healthy weight?

I don't want to confuse or overwhelm you so I'll stop here. Truman truly is a gorgeous dog and I'm sure that little picture doesn't do him justice.

Glynda

Truman's Mom
03-19-2017, 02:08 PM
Thanks, Glynda! You are right, pictures do not do Truman justice, he has always been a "head turner". ;)

The vet did mention the possibility of a pituitary tumor, but since he does not have any other symptoms, he said it is less likely. Thanks for the info on the NSAIDs. At this point, it is immpossible to tell if the weakness in Truman's back end is due to his orthopedic issues or related to the cushings. Thanks for FDA link, that is very helpful. We have been using Wedgewood, also out of New Jersey, but the specialist we went to uses Stoke's and said he has had very good experiences with them. He feels it is worth trying a difference compounding parmacy to see if that makes a difference.

At this point, he is acting like his normal happy go lucky self most of the time. So I don't know if we are better off sticking with our current treatment plan and dealing with the symptoms as best we can or if it's worth trying something else. I wish he could tell me how he feels. When i wake up in the middle of the night and hear him panting, I just want to know that he is not in pain or distress.

I so appreciate everyone sharing their knowledge and experience with the novices, like me, who are struggling to figure this all out!
Annie

Truman's Mom
03-21-2017, 08:30 PM
Hi Glynda...i just re-read your post and didn't see the weight question. I have asked our vet and she thinks Truman's weight is fine. He weighs 115 lbs. He's up a few lbs from a few years ago but nothing drastic.

lulusmom
03-22-2017, 01:37 PM
Hi Annie. I so appreciate that you have been re-reading posts and picking up things that you missed. I remember from experience that I learned something new or realized that I understood what was being told to me a lot better the second and third time around. I have a retention problem, even without the trauma of a cushing's diagnosis, so I had to work a lot harder to wrap my head around cushing's. Thanks for the update on Truman's weight. I love that he's a healthy weight....so much easier for him on a whole lot of levels.

If you change compounding pharmacies, give Diamondback Drugs in Scottsdale, AZ a try. I've been using them for years with my own dogs and a lot of special needs rescue dogs. They are one of very few recommended and trusted by many of us who moderate this group as well as k9cushings dog com. They have passed all FDA and AZ State Board of Pharmacies inspections so no black marks with either regulatory agency. I forgot to mention in my prior post about Stokes Pharmacy that being accredited by by the Pharmacy Compounding Accreditation Board is actually a good thing.

Glynda

Truman's Mom
03-22-2017, 10:36 PM
Thanks, Glynda. There was a typo in my post, Stoke's is NOT accredited which is why i was concerned. I am going to ask about Diamondback as I have noticed their name mentioned multiple times by others on this site.

I'm so grateful for this site, even though I can get obsessed with reading about Cushings, I feel like I need to be as educated as possible so I can be the best advocate possible for Truman.

Thanks!
Annie

lulusmom
03-23-2017, 11:08 AM
I feel like I need to be as educated as possible so I can be the best advocate possible for Truman.


This is definitely our mantra and you have come to the best place possible to help you with your education. If you stumble across something in your research that has you stymied, don't be afraid to ask as many questions as necessary to get your answer or clarification.

Truman's Mom
04-09-2017, 08:56 PM
Thought I would give an update on Truman, mostly because it's therapeutic for me, but I'd also love any advice/guidance/suggestions that anyone has.

We started Truman on the trilostane from a different pharmacy, the IMS thought there was a slight chance, it would make a difference. It seemed like maybe it did very briefly, but now he's back to where he was. No worse, but still somewhat symptomatic (panting, drinking lots, peeing lots, restless, weak back end) although his appetite is pretty normal. We also tried a different NSAID, galliprant, which is supposed to be easier on the liver. I'm not sure if that has made any difference, he actually laid down in the middle of a short walk a few days ago, he has never done that. The vet suggested upping his gabapentin (another pain med), which we have done however we have also dramatically shortened his walks. He's a big boy, if he decided he couldn't make it home, I would be in trouble.

Because of his orthopedic history, it's very difficult to know if the weakness in his back end is related to the Cushings or his bad hips. :(

I just wish we could give him some relief from his symptoms. His constant panting makes me think he is uncomfortable or in pain. I emailed his vet again tonight with an update. I guess we will see what she recommends. Part of me wonders if this is just the way it's going to be from here on out.

It's incredible frustrating, but I know many of you here can relate. Damn disease!
Thanks for letting me vent!
Annie

Harley PoMMom
04-10-2017, 09:18 AM
I was hoping that switching to brand-name Vetoryl would take care of his symptoms, however it is quite possible that he has what is called renal medullary washout. To simplify things, it means all the stuff (solute) his kidneys need to concentrate his urine has been washed out and the kidneys will take some time to recover. Also, unfortunately there is a small number of dogs that never have a resolution of pu/pd despite having their Cushing's controlled. :(

The only other thing that I can think of would be to have a SDMA (Symmetric dimethylarginine) test done to check out those kidneys. This test is a better marker than creatinine for kidney disease. Here's a link to info regarding the SDMA test: https://www.idexx.com/files/small-animal-health/solutions/articles/intro-kidney-test-sdma.pdf

This dratted disease sure is infuriating and know we are here for you so anytime that you feel the need to vent, scream..etc just come here, you can always do that here. ;)

Hugs, Lori

molly muffin
04-10-2017, 09:08 PM
Sometimes venting is just good for the soul.

Yikes, yea I can see why you would only want to do small walks. Not exactly able to pick Truman up and carry him home.

I think it is extremely frustrating when there is no constant resolution. The only thing really that can be done is making sure he is comfortable
An SDMA might be beneficial. It is certainly the go to test for kidneys as it gives early warning with kidneys.

Truman's Mom
04-10-2017, 10:45 PM
Thank you both for your replies. It really is good to know there are others who understand and don't just think I am spending too much time obsessing about him. He's my baby boy, I can't sit still and do nothing!

Is the SDMA test better than an ultrasound and blood work? The IMS that did his ultrasound said the kidneys looked good. I am totally ignorant on this however, can you tell anything by looking at them?

molly muffin
04-10-2017, 11:34 PM
Well I am thinking if it is kidney the sims is the best test foe early detection.
What about diabetes insepidus. That one you give drips for and if it works then you found the problem. It's easier to try than it is to test for actually as the test is hard in them but trying the drops either works or doesn't.
Of course you worry. We are all the same on here. :).

Joan2517
04-11-2017, 08:02 AM
We don't just worry, we obsess...it's a side effect of Cushings.

Truman's Mom
04-11-2017, 12:06 PM
We don't just worry, we obsess...it's a side effect of Cushings.

Ain't that the truth!!

Harley PoMMom
04-11-2017, 12:13 PM
In a Chemistry blood panel the creatinine and BUN are looked at and if elevated than kidney disease could be a factor, however other non-renal issues can cause either one of those levels to be high.

The SDMA test is much more sensitive than the creatinine and BUN in diagnosing an assault on the kidneys, this excerpt is taken from an article titled: Frequently asked questions about SDMA (question #2) :
On average, SDMA increases with 40% loss of kidney function and as early as with 25% kidney function loss. However, creatinine does not increase until 75% of kidney function is lost. https://www.idexx.com/files/small-animal-health/solutions/articles/sdma-faqs.pdf


From that same article (question #38):
What to do in a patient with high SDMA and normal creatinine with no other findings to support kidney disease?

...SDMA increases when there is on average 40% loss of kidney function and as early as 25% loss of kidney function. Where as urine concentrating ability decreases when approximately 66% of kidney function is lost, and creatinine increases above normal when up to 75% of kidney function has been lost. Therefore early in CKD, it is common for the SDMA to be increased and the creatinine to be normal. It is also not unreasonable for animals to still have well-concentrated urine early in the course of their CKD. Therefore, early kidney disease is still possible, and the patient should be rechecked in 4–6 months, sooner if clinical signs or urinary abnormalities are note


And (question #46):
Why is diagnostic imaging recommended in animals with increased SDMA?

Diagnostic imaging is suggested for motivated pet owners especially when urinary calculi, pyelonephritis, renal neoplasia or dysplasia, glomeronephritis, or other structural abnormalities are suspected.

Radiography and abdominal sonography offer the most powerful combination to indicate kidney size and architecture.

So a couple thoughts of mine are; Not all ultrasounds are created equal. A good quality ultrasound/interpretation depends on a few things; the tool used, the technician performing it, and the physician interpreting it. My gen. vet has an ultrasound machine that just doesn't have the power to capture crisp, high-resolution images. The technician, most likely, will perform their own and therefore, it should be those most experienced with capturing good windows and images. That would be a board certified radiologist or board certified IMS.

Since Truman's ultrasound was performed by an IMS I would presume that s/he was experienced enough with executing a reliable ultrasound reading. With Truman's kidneys looking normal on the ultrasound but abnormal SDMA results, if this were me, I would monitor his kidneys with either a SDMA test or having another ultrasound performed in about 2 months.

Of course I do recommend going over all of this with Truman's IMS and see what s/he thinks. ;)

Hugs, Lori

Harley PoMMom
04-11-2017, 06:50 PM
Another thing that I just thought of that causes dogs to drink/urinate more are Tick-borne diseases.

Joan2517
04-11-2017, 08:42 PM
Huh! Would they check for that in blood work? Or do you have to specifically ask them to?

Harley PoMMom
04-11-2017, 09:16 PM
For diagnosing Tick-borne diseases the tests are not included in a routine blood panel. And I believe there are separate tests for each tick. :eek:

Hugs, Lori

Truman's Mom
04-11-2017, 10:58 PM
That's an interesting idea. No one has ever mentioned that. I continue to go back to his elevated ALP level. My gut tells me that whatever is causing that enzyme to be SO high is why his symptoms have not gotten better. In reading others posts, no one else has mentioned a level as high as his, at least not that I have read.

Neither the Dr nor the IMS have an answer for that. :confused:

Harley PoMMom
04-12-2017, 11:17 AM
From my limited reading of tick-borne diseases elevations in the alkaline phosphatase (ALP), alanine transaminase (ALT), and bilirubin are very common, how high they are, I don't know.

Truman's Mom
04-12-2017, 11:28 PM
I can ask the vet, but it's only his ALP that is high. The other liver levels are normal.

Truman's Mom
04-18-2017, 02:28 PM
Starting Truman on desmopressin today to see if it helps. I don't how serious diabetes insipidus is, so I'm not sure what to hope for here. I also ordered him some CBD oil to see if that helps his joint pain. I'm holding off a few days before starting him on it, don't like to start too many new things at once.

Fingers crossed that one or both of these make him more comfortable.

molly muffin
04-19-2017, 08:10 PM
I hope the drops help and he shows improvement on them. It is certainly worth a try and I've racked my brain trying to figure it out and what else can be looked into.

Definitely one thing at a time, so you'll know what is actually working or not working.

Truman's Mom
07-22-2017, 02:10 PM
It's been a while since I have been on this site. Honestly, I was getting obsessed and had to take a break. Here we are a few months later and we have been managing Truman's symptoms fairly well until recently. A few weeks ago, he really seemed to slow down. He became congested and started sneezing and coughing. The vet thought he had an upper respiratory infection and put him on anti-biotics. He got a little better but did not improve as much as you would expect. The vet did a chest x-ray, which looked good and then an ekg, which was also normal. The congestion sounds a bit better but he is still coughing, sneezing and panting. His back end is getting weaker, he is walking very slowly, but he still wants to go, just not far. His appetite is good, which makes me think he is not too uncomfortable.

The vet said that Cushings is progressive and can cause all kinds of symptoms. Has anyone else experienced these types of symptoms?

Harley PoMMom
07-22-2017, 05:30 PM
Is Truman taking the desmopressin? From a quick google search I see that nasal congestion and upper respiratory tract infection are listed as common side effects: http://www.medsafe.govt.nz/profs/datasheet/m/Minirinnasalspray.pdf

Truman's Mom
07-23-2017, 10:09 AM
That's very interesting. It's strange that it would have taken 3 months for that side effect to manifest. I'll ask the vet about it.

Thanks for the response!

molly muffin
07-26-2017, 05:45 PM
Awww, Truman. Hopefully it is something that can be addressed with a med change or decrease. Poor guy, he's done really well though considering where he was at.

The hind leg weakness, we see a lot of the coughing and sneezing, not really in relations to general cushing symptoms.

Truman's Mom
07-29-2017, 04:37 PM
So when do you get concerned about vomiting? He threw up 3 or 4 nights ago, quite a bit. It came on pretty suddenly, but he knew it was coming and tried to get outside but didn't make. Actually, it was me who didn't see his urgency in time. Then just now he did it again. He was acting like he wanted something but i couldn't figure out what it was. He drank some water and then i gave him some ice cubes (he thinks they are treats). He was laying down looking with his head up and suddenly he ran outside and threw up, again it was quite a bit.

All dogs throw up periodically and we haven't changed any medication, so maybe i shouldn't be worried yet?

labblab
07-30-2017, 03:10 PM
With a Cushdog taking trilostane or Lysodren, a sudden onset of acute vomiting is always a worry. How is Truman doing today? Can you tell us what dose of trilostane he is taking right now, and also how recently bloodwork has been performed to check his cortisol level and blood chemistries. Is he is still taking the Rimadyl, as well?

If he is still vomiting, the first thing I would do is hold off on giving him any more trilostane or Rimadyl until he can be checked over by your vet. Please let us know how he's doing, OK?

Marianne

Truman's Mom
07-30-2017, 04:22 PM
Thank you for the reply and concern...He has been ok today.

He ate dinner later last night and breakfast this morning with no issues. He is still taking 90mg of Trilostane 2x/day and .2 mg of desmopressin 2x/day. He's moving pretty slowly, but it's probably the heat which he does not tolerate well.

I'm truly hoping it was just an upset stomach. When would it be considered acute?

Truman's Mom
07-30-2017, 04:27 PM
Sorry, i just saw your other questions. Yes, he is still taking Rimadyl, 100mg, 2x/day and I also have been giving him CBD oil twice a day on his food. I do notice a difference from the CBD, he used to moan when he repositioned himself and he stopped doing that. At one point, i ran out of the oil and he started moaning again. So I am now a believer!

He hasn't had blood work in a a few months and is probably due. The last few vet visits have been for his upper respiratory infection so it wasn't brought up, but maybe I should call and schedule another ACTH. How often should he be tested?

Harley PoMMom
07-30-2017, 09:35 PM
It is recommended that an ACTH stimulation test be done every 3 month, now, if there has been a dosage adjustment than one should be performed in 2 weeks.

Truman's Mom
08-01-2018, 12:43 PM
Hi All,

It's been a while since I have been on here, because Truman's cushings has been pretty well controlled until recently. We have an ACTH test about 6 months ago and his cortisol was normal (unfortunately I don't have the numbers), but his coat looked good, he was acting pretty good until a couple of months ago. We lost our 12 yo Boxer at the end of April and Truman was clearly affected. He seemed depressed and not himself, within a couple of weeks he started shedding profusely (like we've never seen before). His demeaner seamed to improve after a few weeks, but the shedding did not subside and his back end was clearly getting weaker. We took him in for an ACTH a month ago and his cortisol was low, so the vet told us to decrease his trilostane dosage from 90mg 2x/day to 90mg in the am and 45mg in the pm. We just had him rechecked and it's even lower. The vet called the lab and they recommended stopping the trilostane all together and bring him in for a full blood panel and urine test. I asked about stopping vs tapering and she said the lab wouldn't have told her that if it was a problem. That response did not give me a ton of confidence.


I will try to the exact numbers for his cortisol levels, but my immediate question is concerning stopping the trilostane so abruptly. Is there any danger in doing that? It makes me nervous, but I know that low cortisol is also dangerous.

Help!

labblab
08-01-2018, 06:01 PM
Sorry for such a brief response but I only have a moment to post right now. But yes, absolutely you can abruptly stop the trilostane — there is no need to wean off gradually. If Truman’s cortisol level is too low, indeed the best thing is to totally discontinue the medication for now.

Marianne

Truman's Mom
08-01-2018, 07:31 PM
Thank you so much Marianne! We will stop immediately!

Stay tuned...
Annie (aka Truman's Mom)

Truman's Mom
08-01-2018, 07:37 PM
Another question...I have read conflicting information on dosage of Trilostane. Truman is 120lbs and has been on 90mg, 2x/day. One some sites that is within range, others it is high. Any thoughts on that?

labblab
08-01-2018, 11:49 PM
When first beginning treatment, initial trilostane doses are based on weight. The most commonly accepted formula now is to start at a total daily dose no larger than 1 mg. per pound. Subsequent dosing changes are then based solely on a combination of observable clinical response and monitoring blood test results. There is great variability in the way that different dogs respond to the medication, so a small dog may end up needing to take a larger dose than a large dog. In that vein, research and clinical experience have demonstrated that many large dogs actually end up requiring relatively small doses of the medication.

As you have discovered, cortisol levels can change over time even when a dose remains unchanged. For this reason, monitoring testing is recommended every three months even after a dog has presumably stabilized on a given dose.

So in answer to your question, based on his weight, we would have recommended that Truman start out on a daily total no greater than 120 mg., and perhaps even less than that. Dosing changes then would have been based on symptom resolution and monitoring test results. Whether or not 180 mg. was ever appropriate for Truman would depend on his outward reaction and the previous ACTH testing. So we would need to know the actual test numbers to be able to judge whether his dose was too high, too low, or within therapeutic range for his individual needs.

Marianne

Squirt's Mom
08-02-2018, 10:59 AM
I have merged your latest post about stopping Vetoryl (Trilostane) with Truman's original thread. We like to keep all info about each pup in one thread. That way it is easier to look back thru the history for both members and you.

Truman's Mom
08-08-2018, 10:20 AM
Finally got the results from Truman's blood tests back and apparently they are all normal, except for one of his liver values. It's so frustrating because she leaves a message, I call back but can never reach her to ask specific questions. I am also incredibly frustrated because she said in her message that maybe we should limit his water intake since he is drinking so much. That is the exact opposite from everything I have learned about cushings!! I am quickly losing confidence in this vet and am about ready to make a change. At any rate, I have requested that they email the results from his last two stim tests to me so I can share them here. In the meantime, Truman is holding his own...but drinking and peeing a lot, it is also been very hot and humid here which may be contributing to that as well. Right now, I am at a loss and don't know what to do for him.

Harley PoMMom
08-08-2018, 01:45 PM
You are correct, one can never restricted water to a dog that has Cushing's or is even suspected of Cushing's, OMG, I can not believe the vet said that was an option.

We really need to see those test results, could you go to the vet's office and ask for copies?

Truman's Mom
08-09-2018, 10:43 AM
I felt the same way when she told me that. In fact, I called one of the founding partners of my vets office and asked him to call me.

So here are Truman's result from the last two tests:
6/29/18 Trilostane at 90mg 2x/day (same dosage for the last 2 years)
Sample 1: 1.5 (Normal 1.0-5.0)

Sample 2: 1.4 (Normal 8.0-17.0)


7/31/18 (Trilostane reduced to 90mg am and 45mg pm)

Sample 1: .90 (Normal 1.0-5.0)

Sample 2: 1.6 (Normal 8.0-17.0)


Please let me know if you have any suggestions, thoughts or ideas on this!

Thanks!

Sample 1: .

Truman's Mom
08-09-2018, 10:55 AM
Forgot to mention...I took Truman off Trilostane altogether after the last ACTH test on 7/31.

Harley PoMMom
08-09-2018, 11:10 AM
I felt the same way when she told me that. In fact, I called one of the founding partners of my vets office and asked him to call me.

Good for you! And hopefully he'll listen and take action.


So here are Truman's result from the last two tests:
6/29/18 Trilostane at 90mg 2x/day (same dosage for the last 2 years)
Sample 1: 1.5 (Normal 1.0-5.0)

Sample 2: 1.4 (Normal 8.0-17.0)

With a post of 1.4 ug/dl the Trilostane should have been discontinued and not restarted until Cushing's symptoms rebounded and/or an ACTH stimulation test showed that the adrenal glands were producing enough cortisol.



7/31/18 (Trilostane reduced to 90mg am and 45mg pm)

Sample 1: .90 (Normal 1.0-5.0)

Sample 2: 1.6 (Normal 8.0-17.0)


Please let me know if you have any suggestions, thoughts or ideas on this!

Thanks!

Sample 1: .

Truman's post is till too low; according to a renown Cushing's expert, Dr. Mark Peterson, a dog being treated with Trilostane should not have a post value below 2 μg/dl. Here's his excerpt:
When using trilostane, it has become increasing clear that we do not want the cortisol values to drop too low, because that may indicate early or mild adrenal necrosis (1,11,12). In contrast to the protocol used in this reported study, I recommend stopping the drug in all dogs that develop a ACTH-stimulated cortisol values less than 2.0 μg/dl, and repeating the ACTH stimulation test in 1- to 2-weeks in those dogs. Some of these dogs will require that the drug be restarted at a lower dosage, but others will maintain low to normal serum cortisol concentrations for prolonged periods of time. And a subset of these dogs, presumably because of mild adrenal necrosis, will never need any further trilostane treatment to control the signs of Cushing's syndrome. https://endocrinevet.blogspot.com/2012/12/low-dose-twice-daily-trilostane.html

So my advice would be to not restart the Trilostane until Truman's adrenal glands begin to produce an adequate amount of cortisol. How is his appetite and is he drinking/urinating normally? Any diarrhea?

Lori

Truman's Mom
08-09-2018, 11:26 AM
His appetite is good, he is drinking and urinating quite a bit, but it is also very hot and humid here. He is 120lb St Bernard mix who does not tolerate the heat well, so it's hard to tell if he is drinking a lot because he is hot or something else. No diarrhea, stools are normal.

His back end is pretty weak, it usually gives out a couple of times when we go on our short walks. Again, because he has had pretty severe hip issues all his life (THR on one side at age 2, he's 10 now), I don't know if this is because of his hips or muscle loss from the Cushing's. The "Help em up Harness" has been a great help, I would highly recommend it. It was designed by someone specifically for his dog who had Cushing's.

Harley PoMMom
08-09-2018, 12:28 PM
When is the vet planning to test his cortisol levels again?

Truman's Mom
08-09-2018, 03:31 PM
She didn't say, but I'm going to ask the other vet when he calls me back. How soon do you think we should check?

Harley PoMMom
08-09-2018, 04:16 PM
Dr Peterson recommends retesting in 7-14 days, so since Truman's last ACTH test was 7/31 I would think before the 15th of August would be good.