Some Learnings- re: Trilostane and Cushings

[MagicsMom]

Hi,
I am new to this forum and wish I would have found it sooner. I have learned so much these past two days with my Cushinoid dog, that I wanted to share some of this with others. Some are so basic but I just didn't realize so thinking maybe others are in the same boat.

First, meet Magic. He is my 25lb Cockapoo that I adopted when he was a puppy. He is now 14 years old and was diagnosed with Cushings March 2012 after many months of trying to confirm what was wrong with him.
He has been taking 10mg of Trilostane 2x a day since diagnosis (16months). It has been fantastic up until recently when he seems to be showing signs of Cushings again (thirst, food, tail getting a little ratty, constantly urinating, etc.). So I decided to up his Trilostane to 3x a day until I could get him in for a slightly overdue ACTH test (lesson #1:).

I have relocated since this whole thing started and my vets did not seem too knowledgeable about cushings and testing, etc. so I didn't think it worth traveling hours to keep my same vet that I've used all Magic's life. I felt like I was educating them which is pretty scary! So I now live about 45 minutes from UC Davis in CA and they have a very respected Small Animal Clinic/Internal Medicine so I decided to take Magic there. This is where my real Cushing's education has begun, and some items I wanted to share. I will caveat this that I am far from an expert so what I have below is simply my interpretation.. please feel free to correct or verify for yourself before changing anything based on my information.

I could write a book about my past two days, but let me just share some key points. Some are pretty basic but I can't say I realized..

1) If you give your dog Trilostane 2x a day.. it should be evenly spaced out every 12 hours.
2) If you give your dog Trilostane 3x a day.. it should be every 8 hours
3) You should give the Trilostane with a meal. However, wait until 'after' your dog eats his meal to make sure he/she is eating. As we all know Cushings cause ravenous appetites.. if your dog does not have that appetite, he likely does not need a Trilostane that meal.
4) An Addisonian Crisis can occur if there is not enough cortisol/steroids in your dogs system (opposite of Cushings which is too much in system). This can be deadly and needs to be acted on ASAP. If your dog does not eat at all, or misses several meals, pay attention! And don't just keep giving him his Trilostane! Call your vet.
5) You don't want to overdose/overcorrect Cushings. Too much Trilostane can cause and Addisonian crisis which is much more critical than Cushings. Trilostane is not a benign drug. It is poisonous to humans so make sure you wash your hands after you handle.
6) Don't 'up' your dogs dose without getting an ACTH and talking to your vet.

I could go on and on. For the past 16 months I really didn't think Trilostane was very dangerous or potent. I certainly didn't realize the criticality of Addison's and that if my dog is not eating or seems sick, you give him less Trilostane not more. I was very diligent to make sure my dog always got his pill, no matter what else was going on. And if was more convenient to give the second pill 6 hours or 16 hours after the first one, no big deal as long as he got two a day.

I appreciate this forum and hope that some of what I've learned, will help someone else. Thanks.

[Budsters Mom]

Hello and welcome:)
You have come to the right place! There are many K9Cushing's angels standing by to help and stay with you every step of the way. They love details, test results, any information you can get your hands on. The more the better. We will do all we can to help, but be ready for lots of questions! Others will be dropping into welcome you also. So again, welcome to you an your precious fur Baby. Hugs,

[Budsters Mom]

I just realized that your baby's name was Magic. There is a lot of magic that happens around here. There is definitely divine intervention at work! Sit back and relax. You are one of us now. We are here for you.:) Hugs,

[Roxee's Dad]

Hi and welcome to you and Magic,

Yes what you wrote is very true and the main reason we are here to help. We love our cush pups and their families.

How is Magic doing these days?

[frijole]

:D:D:D:D Oh yes lessons learned... we see this all the time. And as John said, that's why we are here. Actually the first lesson is that your original vet should have spent more time educating you on what to do and what not to do and how the drug works. You are right, too many think it's a simple drug like alot of other drugs and they don't understand the harm it can do. So did your dog go Addisonian or just close? ;):D;) Kim

[Trixie]

I was lucky enough to find this board before we started on the medication. Thanks to all the experienced board members we started the drug with a lot of knowledge on side effects, dosing, washing hands etc. Thank goodness!
So- how is Magic doing now? Did his dose go up? Are you still giving 3x a day? Curious to know whats going on with your pup now since you've started at UC Davis.

Barbara

[MagicsMom]

Hi.. thank you for your comments and concern.
Magic is doing good now. My other key learning is putting him in a stressful situation all day, burns cortisol, and I probably should not have given him a Trilostane after being at the vet and in tests all day(got there at 11, left at 7) and definitely should not have given him a Trilostane this morning.

Here's what happened- open to thoughts and feedback:

1) Yesterday, I took him to UC Davis to get an ACTH and 'fix' his Trilostane dosage.
However, they wanted to do all the blood work, ultrasound and confirm there wasn't anything else going on first. (very thorough!). So he was there all day and his bloodwork and tests came out good. He does have a 4x4cm growth on his spleen but this is separate from the cushings.

So he was pretty worn from the day, and I gave him a Trilostane with dinner (probably shouldn't have).
He was to return today for ACTH so we could adjust dosage.


2) Last night he vomited about 1am and again at 2:30am (very rare for him). He was very slow getting up this morning. I had to give him a Trilostane at 8 (3-4 hours before ACTH) so gave it to him in a treat. However, he did not eat his food (even more rare) and was lethargic (rare). Finally 30 minutes later, he ate his food slowly but definitely not himself. (lesson #2- should not have given him the Trilostane this morning!)

3) I called the vet because I didn't think we would get a good reading to adjust his dosage if he was not 'normal'. I wanted to keep an eye on him and bring him next week for ACTH. I was not really concerned that he was having an Addison's crisis just thought traumatized from yesterday.

4) They wanted to see him.. Took him to UC Davis and they had several doctors consult on what was going on (this part just amazes me.. someone actually paying attention and really trying to figure out what's best for him!). They did another check up, ekg and some bloodwork to check potassium and sodium levels. He's still not himself but slowly getting better and more energetic. Everything came out normal, and I declined an ACTH today (it would not be valid for dosing and I did not want to spend $300 to confirm he was not having and addisonian crisis (of which I've learned a ton about and knew little 3 days ago!).

Keeping a close eye on him and not to give him anymore Trilostane until he is very very hungry and thirsty again! He ate his dinner with no problem and is drinking and is getting more like himself.

So right now, no Trilostane for a day or two- until I have a full blown cushionoid dog again! Then 10mg 2x a day. Doing ACTH on Tuesday to adjust dosage assuming all goes well this weekend.

We will likely compound his Trilostane based on what we think dosage should be. 10mg is too low and I'm sure 30 at one time is too much. So this is a great option for Magic. Wondering if anyone else has used compounded Trilostane and if there is anything I should worry about (are you really still reading this? :) . I may post that question

Thanks again.. I'm certainly open to any thoughts and comments.

[Roxee's Dad]

LOL.. yes we are really reading this :D

They found a growth on Magic's spleen. Leslie also had that experience with her Squirt, I am sure she will stop by and share her experience.

Probably a great idea to get him stabilized and then restart the Trilo at the lower dose and then get him checked.

Many of us use or have used Diamondback Pharmacy. It's on line and they will compound the Trilo for you in whatever doses that Dechra doesn't provide. I have always had good results with them and they are very helpful on the phone.

[frijole]

One of our members, Leslie, has a dog that had a tumor on the spleen and prior to that had tested positive for cushings. She had the tumor removed the cushings' symptoms went away. I'd look into having that removed.

Another lesson is never ever give trilostane to a sick dog. If a dog is vomiting, lethargic or has diarrhea withhold the dose until the dog is back up to snuff. Those are all signs of overdose/cortisol too low and withholding it allows the body to regenerate the cortisol that is needed to live. We have had dogs die when owners didn't realize this. I share this not just with you but all the others online that are reading this story.

Glad you found UC Davis - they are very familiar with cushing's. Re your dog - when you get the results please let us know. It is real helpful to put all tests in a file for future reference so you can recall dates of acth tests, dosing amounts etc. Comes in very handy up the road.

Kim

[frijole]

oops sorry Leslie. I'll let you tell him the whole story. :D Kim

[MagicsMom]

wow.. I'd love to hear from Leslie.. how do I find her?

[frijole]

She will find you! She's here all the time. OMG your dog is beautiful. Glad you figured out the photo thing. Kim

[Simba's Mom]

Hello and welcome, so glad you found this site, sounds like you are learning a lot, settle in and get comfortable lots of info and encouragement here....

[Trixie]

Your dog is adorable! :p
Yes...many here using compounded Trilostane. I started my dogs on compounded and now using branded Vetoryl 10mg along with compounded Trilostane 4mg to make up 14mg which I give 2 x day.
Had to do a lot of dose tweaking along the way...we started at 6mg 2x and worked our way up to the 28mg split in two doses.
Glad to hear Magic is feeling better now. Hope you get the dose figured out...sounds like your in good hands at UC Davis.

Barbara

[Harley PoMMom]

wow.. I'd love to hear from Leslie.. how do I find her?

Here is part of a post where Leslie mentions about Squirt's spleen:


You are doing a good job of researching and asking questions....and pursuing additional testing. The ultrasound is one test I cannot recommend highly enough - it saved Squirt's life by finding a tumor on her spleen. Her cortisol was high and she tested positive on all tests for PDH. But once that tumor was out, her cortisol returned to normal and remained within range for several more years. Be as thorough in the testing as you can possibly be to rule out other causes for the signs and elevated cortisol. Cushing's is one of, if not THE, most difficult canine disease to diagnose because so many other things share the same signs and other conditions can cause elevated cortisol. So take your time and be very comfortable with the diagnosis before starting treatment. Once treatment is started, we will be here to help you along if needed.

I'm glad you found us and look forward to keeping up with Ricky's story.
Hugs,
Leslie and the gang

I am sure dear Leslie will be around soon.

[Squirt's Mom]

Hi Mom!

Welcome to you and Magic! :)

My Sweet Bebe's story started in 2007 with pre-surgical blood work for a dental which showed elevated cortisol. Thankfully, we had a very thorough GP vet and Squirt has a very stubborn Mom. ;) Squirt had the LDDS, HDDS, ACTH, UTK panel, and two ultrasounds. After the second US, I was told about the tumor (which had been there the first US but that IMS didn't feel the need to tell anyone about because she was leaving that clinic soon :mad::mad::mad:). So for four months that tumor had been allowed to grow thanks to an inept IMS. :(:(:( Squirt tested positive for PDH (pituitary based Cushing's) on all of her testing BUT once that tumor and half her spleen were out, her cortisol returned to normal. That was in Sept. of '08. Her cortisol didn't start to rise from true Cushing's until about 3 years later.

Cortisol is one of the fight or flight hormones and it elevates in the face of any stress - internal or external. This is a normal body response to stress. ALL of us react this way to stress. Many of us here would test positive for Cushing's most days! :p Squirt's tumor was causing the positive results on her testing NOT Cushing's - her cortisol was elevated in normal response to that tumor and once it was out, there was no longer any need for so much cortisol. ;) So her body stopped over-producing it and her level returned to normal range. And we were lucky - her path report was clear, no cancer. These cush tests cannot tell us WHY there is excess cortisol in the body, only that there is. The cortisol will have the same effect on the body, same signs, whether from true Cushing's or from another source of stress. ;)

I'm a little surprised at Davis - one, they let Magic leave without an ACTH in the face of his condition, which could have put his life at risk; and two, they didn't tell you how serious this tumor could be. I was told that often these tumors are cancerous AND they will rupture, causing death. Since Squirt's experience, I have had a number of friends with pups who had tumors on the spleen - two ended up being Hemangiosarcoma - what they feared with Squirt. All that were known about before hand were removed immediately, one wasn't known about until it ruptured. So in light of my experiences, I would stop all Cushing's treatment TODAY and pursue this growth on Magic's spleen asap.

Because Squirt's intermediate hormones are also elevated, we use Lysodren. I have a hard time keeping up with Trilostane (Vetoryl) but some of the things you have said do not sound quite right.


3) You should give the Trilostane with a meal. However, wait until 'after' your dog eats his meal to make sure he/she is eating. As we all know Cushings cause ravenous appetites.. if your dog does not have that appetite, he likely does not need a Trilostane that meal.

Unless the pup is showing signs of an overdose, you give the Trilo. You do NOT want to see the cush appetite so you don't withhold the med until you see that again. Trilo is to be given every single day UNLESS the pup is acting as if they have had too much - like Magic was when you took him to Davis. ;)


6) Don't 'up' your dogs dose without getting an ACTH and talking to your vet.

Anytime the Trilo dose is changed, up OR down, a follow-up ACTH must be done 10-14 days after the change - and you are right....never change your pup's dose on your own, never, ever, ever. ;)


3) I called the vet because I didn't think we would get a good reading to adjust his dosage if he was not 'normal'. I wanted to keep an eye on him and bring him next week for ACTH. I was not really concerned that he was having an Addison's crisis just thought traumatized from yesterday.

An ACTH needs to be done every time you see signs like you saw in Magic - loss of appetite, lethargy, vomiting, loose stools / diarrhea. This is NOT an option - it is a life-saving measure. When a crisis is suspected, and this sure sounded like a crisis in the making to me, it does not matter when they had their last dose of Trilo - the ACTH must be done to know where the cortisol is at that time.


So right now, no Trilostane for a day or two- until I have a full blown cushionoid dog again! Then 10mg 2x a day. Doing ACTH on Tuesday to adjust dosage assuming all goes well this weekend.

Since no ACTH was done while Magic was showing signs of an overdose, you have no idea what his numbers were (what the actual cortisol level was) then or now. You are operating blind so to say. In the face of the apparent overdose, he should not take any more Trilo until AFTER an ACTH shows his levels are once again elevated and his signs are strong again...if you decide to restart it before finding out about the tumor. SO he should not have any more Trilo until AFTER the ACTH Tuesday so you know what his cortisol level is. Otherwise, you are playing Russian Roulette. ;)

Now, like I said, I have a very hard time keeping up with the ins and outs of Trilo so I hope some of our Trilo parents will be along soon to set me straight if need be. :D

And again, if it were me, I would forget all about Cushing's until I knew all about that tumor on his spleen. ;)

I'm really glad you found us and look forward to learning more about you both as time passes. Never hesitate to ask questions - if we don't know we will help you research and we will all learn something. The most important thing for you to know today is that you and Magic are not alone, you will never be alone. You are family here now and we will be by your side every step of the way. You will find astounding knowledge and first-hand experience...and unbeatable support at K9C. All you ever need to do is reach out and you will find us reaching back.

Hugs,
Leslie and the gang

[MagicsMom]

Wow.. thank you so much for all the replies and information.
It is much appreciated. We have read the posts over and over and are in process of digesting it all and doing some more research.

It's kinda odd that Magic has been treated for cushings (successfully so far) for 16 months, yet there is so much we were unaware of.

We were given so much info at one visit at UC Davis that we are still trying to absorb it all. I thankfully found this forum when I was researching what we were told.

Magic is doing very well today and pretty close to normal. I'm planning to proceed with the ACTH at UC Davis on Tuesday and continue to gather all the info I can on the spleen mass and will talk to the vet about this some more and options.

My goal above all else is to make Magic's quality of life as great as it can be. We would sacrifice his longevity for quality. It's just trying to figure out that balance and risk.

Thanks to all here. One day I hope to help provide this same service and insight to others.

Karen, Richard and Magic :)

[knitbunnie]

Magic is doing very well today and pretty close to normal. I'm planning to proceed with the ACTH at UC Davis on Tuesday and continue to gather all the info I can on the spleen mass and will talk to the vet about this some more and options.
)

Hi - My little Pia and I will be there on Tuesday, too! She needs an ACTH stim test after a change in trilostane. I will be on the lookout for pretty Magic! If you see a woman with a very sad looking brindle French Bulldog, it's probably me. I usually knit while we wait our turn. ~ Bonnie

[MagicsMom]

Hi,
It doesn't look like we will be at UC Davis on Tuesday.
We stopped Magic's Trilostane dosage on Friday after his issues and he has been very stable and 'normal' since then. No excessive eating, drinking, good energy. So at this point we have not put him back on Trilostane so no point in doing an ACTH. It's quite odd. He has not been without Trilostane for 16 months. So not sure how long this will last, but until he starts back with his Cushings symptoms we will wait and watch.

Bonnie- good luck with Pia.. I'm really sorry to hear about all her struggles. Hopefully tomorrow's visit will be a valuable one and get her on the road to feeling better. Hope to meet you at some point.

[molly muffin]

Hello and welcome to you and Magic.

Awww, too bad you couldn't have met up with Bonnie and Pia at UDavis.

There is so much that vets don't seem to know themselves and/or doing share with their patients when they start down this journey with cushings and treatment.
The basice though you now know and hopefully Magic will just end up having a break from medication. I can pretty much assure you that you will Want to know what those values are for an ACTH sometime sooner rather than later, so you know exactly what was going on or is going on with Magic. If the numbers for instance were good, in a normal range, then it could have been something else like the tumor on the spleen that is acting up. If the number dropped too low, then you want to know how low did it go and know the medication that you were on at that time, so as to be aware going foward.
ACTH tests are the best tool you have once they are on medication of evaluating what is going on with them.

Again, welcome!
Sharlene and Molly Muffin

[MagicsMom]

Just writing here helps me keep things straight.

Started Magic back on Trilostane on Tuesday. His normal behavior was awesome for a few days but back his cushings symptoms came back strong.
Took him to UC Davis for his ACTH today.. waiting for results but I expect it to indicate he needs a slightly higher dosage of trilostane (currently 10 mg x2).. so we will learn about compounding soon I have a feeling.

But had a great conversation with vet about his spleen. My husband and I have been researching and researching and reading and talking to people, etc. Anyway, he also had xray of lungs today which appear clear so we are going to move forward and remove his spleen.

I'm trying to schedule but likely end of the month. So for now, cushings is secondary... we will keep it controlled and get the spleen out and see where we are.

I'll post his ACTH numbers when I get them.
Thanks.. have a great weekend.

[Squirt's Mom]

Did you talk to a surgeon about the spleen, or his GP vet? They agreed it needed to come out? I wouldn't be comfortable with the GP doing this surgery and would want a board certified surgeon. ;) For some reason, I am feeling as if I talked you into this. :eek: Of course, there are times I sure I'm responsible for WWI, too. :p Yes, I am the reigning Queen of Guilt and Worry. :D I'm glad you did some research and talking to folks about this.

Keep in touch and let us know how things are going. I hope the Trilo works well while you wait and doesn't cause any more problems for our sweet Magic.

Hugs,
Leslie and the gang

[goldengirl88]

Hoping everything goes well if you have the spleen removed. I would only have a Board Certified surgeon do it. I am so wondering if this is a Cushings thing as others on here have had spleen issues also. Blessings
Patti

[Squirt's Mom]

I doubt the spleen issues seen in our members are the result of the pups having Cushing's. I haven't read anything to support that anyway. ;)

[MagicsMom]

Did you talk to a surgeon about the spleen, or his GP vet? They agreed it needed to come out? I wouldn't be comfortable with the GP doing this surgery and would want a board certified surgeon. ;)

1) Only talked to vet but absolutely meeting with a board certified surgeon that has removed 100's of spleens I am told. That is next appointment which we are still trying to make. Would never do this without their opinion weighing in and an 'expert' doing it.
One of the great things about UC Davis is they have awesome specialists for just about everything. And actually cheaper than my 'other' vet. So don't seem much downside. (although scheduling and communication a bit of a challenge sometimes).


For some reason, I am feeling as if I talked you into this. :eek: Of course, there are times I sure I'm responsible for WWI, too. :p Yes, I am the reigning Queen of Guilt and Worry. :D I'm glad you did some research and talking to folks about this.

2) Part of what is so neat about this forum is the knowledge and strong convictions. It is clearly always coming from the heart and that goes a long way. With that said, every case is different and though the opinions are greatly valued, I feel the need to do my own research on very important things (which Magic is top of that list!) and use the opinions and information as input to that research.

We have read everything we could find on dog spleens on the internet and talked to people with some experience and knowledge.. We even have a friend that is a radiologist (people) that we consulted. I put together a two page document that I sent to Davis and we went over with them when we were there yesterday.
It outlined 1) my goals for Magic (quality of life over quantity, etc), 2) The options (leave it, biopsy, aspiration, remove) 3) risks 4) Our conclusion (which was actually to wait a month, have another ultrasound, try to determine as best as we can if cancerous- if no signs of cancer then look at having removed). 5) The information our conclusion was based on (fact or fiction? are these items correct?) and finally a list of questions of things we could not find consistent /conclusive information on.

I'm happy to share this if anyone is interested.
And again, our initial conclusion was that we did not want Magic to go through a splenectomy unless we were fairly certain the mass is benign (and there is about 1:3 chance of that.) So we wanted to wait and see what was happening and do another ultrasound in a month.

However, after going through all this at Davis yesterday and addressing our assumptions and questions (many which were a little off per UC), I feel very good about the decision to just move forward (at least forward with the surgeon consultation).

So this should definitely relieve any stress/guilt/responsibility you may be feeling.:) Although I very much appreciate the passion and information and hope that doesn't stop.

Thanks again for your time, input and caring.. have a great weekend.
Best,

Karen and Magic

[Squirt's Mom]

You're a good mom and Magic is so lucky to have you on his team!

[MagicsMom]

Update...
Magic's ACTH came out good
2.8
3.5
So going to keep him on 10mg x 2. I'm kinda surprised because these past few months his thirst and hunger and peeing have increased quite a bit. But will leave this for one for now as we deal with the spleen.

He has appointment with surgeon on Aug 29th and scheduled to have his spleen removed on the 30th (assuming tests and conversation with surgeon go well). We have done tons of research and gone back and forth on whether to remove his spleen or let him be. But our final conclusion is to remove it. At least we will know and it removes the possibility of rupture (which is my biggest fear).

So we will relook the Trilostane and cushings once the spleen is out and we have a diagnosis on that. I will post the outcome of surgery and if the spleen removal has any impact on his cushings and/or his symptoms. Stay tuned....