Newly diagnosed - Any success stories with Tristolane?

[Bamafanroz]

My name is Roz. My baby is Rex. He is a 12 year old Teddy Bear ( half Bischon and half Shiz Tsu). He is fairly asymptomatic with only slight increases in drinking water and urination but wakes us up 3-4 times a night to potty. Proteinuria +2 - ALT 196 and ALP 520. Also elevated cholesterol 442. Platelet count also high at 480. Glucose not high yet but super high “normal”. Then ran Bile Acid test and cortisol blood work. Bile acid normal and cortisol high. He weighs 16.9 lbs now.

Had all this blood work done because of pre-dental anesthesia. So.......dexamethisone suppression test was next.
Cortisol pre-Dex: 8.7
Cortisol 4 hr post Dex: 0.7
Cortisol 8 hr post Dex : 6.7

Vet says Pituitary dependent Cushings disease is his diagnosis.

I want to treat. Vet wants to treat with Vetoryl 10mg once daily to start with follow ups to determine dosing.

My question is - Are there any positive stories treating with Vetoryl? After reading some of the posts, I am now frightened.
I could use some advice here. Anything will help!

Thanks in advance for helping me through this!

[labblab]

Hello Roz, and welcome to you and little Rex! I’m sorry you have need of our services, but under the circumstances, I’m so glad you’ve joined us :-). All of the lab abnormalities that you’ve noted are indeed consistent with Cushing’s. In terms of Rex’s comfort, it sounds as though he’s not yet being bothered too much by observable symptoms. Often when that’s the case with older dogs, we don’t feel as anxious about urging owners to start right up with treatment. But some specific exceptions are when a dog is exhibiting high blood pressure, proteinuria, and/or elevating glucose levels. Those conditions can be directly related to high cortisol levels and if untreated, can precipitate more serious systemic problems. So under the conditions you’ve reported, I do believe I’d want to start treatment, too, if Rex was my own dog.

Your vet is exactly right — the results of the LDDS point towards a pituitary tumor. And I’m very relieved to hear that he is recommending that you start with the relatively low daily dose of 10 mg. While there’s no way to predict in advance exactly what the optimal dose will turn out to be for any given dog, you’re definitely minimizing the risk of unwanted side effects by starting with a low dose and working upward, if needed.

I’m so sorry that you’ve become frightened by reading some of the stories here. Again, there’s no way to know how the path forward will unfold for Rex. Cushing’s is not a kind disease, and the medication is powerful. But over the years, we’ve witnessed many success stories here! However, as you might imagine, folks for whom everything goes smoothly may not stick around for long — if they even register and post as members to begin with. If all goes well for their dogs, they may quickly fade away from here once they resume their normal lives. Folks who stay and post may do so because their dogs have encountered some specific problems, and so you may read about more serious complications. (But on a much cheerier note, some folks stay with us just because they feel attached to our family here!).

Anyway, for right now, it sounds as though your vet is right on top of things. Once you do start treatment, here’s an important tip. When trilostane is given once daily, it’s best to administer it in conjunction with breakfast. The drug is metabolized most efficiently when given along with a meal. I’m going to give you a link to a thread on our Resouces forum that provides even more treatment tips.

https://www.k9cushings.com/forum/showthread.php?8925-GENERAL-GUIDELINES-for-Dosing-and-Monitoring-Treatment-with-Vetoryl-(trilostane)

I’ll go ahead and close for now. But please feel free to ask any more questions that come to mind. And once again, we’re so glad that you and Rex have joined our family.

Marianne

[labblab]

And a quick P.S.: Being a Georgia resident, I couldn’t help but notice your username...

I see you’re posting from Wisconsin, but might “Crimson” actually be your favorite color??? ;);););)

[Bamafanroz]

Yes lol. I live in Wisconsin but I am a 3rd generation graduate of the University of Alabama ��❤️

[Bamafanroz]

And thank you so much for your thoughtful reply. I understand what you are saying. Rex’s Cushings diagnosis was caught early through routine bloodwork. I wanted to start the medicine while he’s still healthy otherwise or the excess cortisol is going to cause other major health issues. I am hoping I will be one who can stick around and help others after successful early intervention for Rex! I’ll keep you updated. I ordered his medicine from an online therapy and going to start it Friday am so I can watch him all weekend. Thanks for the links about how to administer the medicine, too.

I really appreciate everything you told me!

[LauraA]

Just wanted to say that my old girl was 10 when diagnosed and she has done really well on the meds. She is now 16 years and 7 months old :) Unfortunately old age is catching up on her fast the last few months, though nothing to do with the Cushings. With that starting dose and by making sure you have the regular test while on the meds Rex should do fine.

[Bamafanroz]

Oh thank you for your reply! I’m starting the medicine today! I will keep you both posted on his progress! Thank you for giving me hope and strength to make this important decision for Rex’s well-being and health!

[labblab]

I so appreciate Laura’s reply, too, sharing her positive experience with you. We’ll definitely be hoping that today goes smoothly for Rex! Do let us know when you have the chance.

Beaming positive thoughts your way,
Marianne

[Bamafanroz]

Wow! Great news to report. Rex is doing great! No issues with medicine and he only woke us up once to go potty last night! He seems to have more energy today and seems so happy and bright! I think we must have caught this diagnosis early! Fingers crossed this positive trend continues! Thanks for your heartfelt positivity for Rex!

[labblab]

Ahhhh, that’s great news, for sure! Hoping that things are still going smoothly for you guys!

Marianne

[Bamafanroz]

Update on Rexie: He has been on 20 mg dosed once daily with his meal for the day. He started the tristolane 6 days ago. What a difference this medicine has made for all of us! He is sleeping all night and not waking us to potty! He’s running around, playing with his toys and chasing his kitty siblings (they love it and have missed playing with him).

He goes in for his blood testing on Tuesday which will be 13 days from the starting of this medication. I am only seeing positive side effects so far! No lethargy, no poor appetite, etc.

What will vet be looking for with this blood testing? How will we know if he needs to titrations up or down with this medicine? What else should I be looking for or ask my vet about at our next visit?

[Squirt's Mom]

Great news about the improvements so far! As for what the vet will look for - they will, or should, ask you if you are seeing improvements in the signs and which one and how much improvement. The blood work they will do is what will tell them the actual amount of cortisol in Rexie's system and if that is within range, still too high, or too low. Regardless of the number you do NOT want to increase the dose just yet because the cortisol typically continues to fall for the first 30 days on the same dose. If the cortisol is too low, however, then a decrease is required. In some cases if the dog has been started on a VERY conservative dose and the signs are not improving at all plus the test shows the cortisol is still too high then it is ok to increase by a small margin. In general increases should be around 25% of the previous dose....never doubled. So what you are looking for this test is a decrease in the cortisol since you say the signs are improving. Keep an eye out for the negative signs but it sounds like you and Rexie are off to a great start!

Hugs,
Leslie

[Bamafanroz]

Thanks for the reply! I did not realize that his cortisol level could still go too low at this dose without an increase so thanks so much for sharing! I will be vigilant for signs of adverse events. What are the first symptoms I should notice?

[Joan2517]

Lethargy, vomiting, diarrhea, refusing to eat or drink....

[labblab]

Hi again from me! Just wanted to add a couple more thoughts, too. First, I want to clarify Rex’s dosage. When you first wrote, you said he’d be getting 10 mg. a day, but now you’re mentioning 20 mg.? Given his weight of approx. 17 pounds, 20 mg. is still an appropriate starting dose, but I just want to make sure if that’s really where we’re at.

Also, if Rex is being given an ACTH stimulation test next week to monitor his cortisol level, it’s important that he be given his morning dose of trilostane along with breakfast, as usual. He should not be fasted before taking the test. This is because trilostane needs to be given along with food in order to be metabolized properly. If not, the monitoring test may falsely indicate that his cortisol is running higher than usual. As Leslie has written, dosing increases are usually not made until after 30 days, regardless. But with every monitoring test, we want the results to be as accurate as possible.

Here’s a link to a publication printed by Dechra, maker of brand name Vetoryl. At the bottom, you’ll see a flowchart that shows you how dosing decisions are made based on monitoring ACTH tests. I think this info may be helpful.

http://www.dechra.us/Admin/Public/Download.aspx?file=Files%2FFiles%2FSupportMaterial Downloads%2Fus%2FUS-046-TEC.pdf

Continued good luck, and keep up the good work!
Marianne

[Bamafanroz]

Hi Marianne,

I was mistaken about the 10mg dosage. The capsules were supplied in 10mg dosage and once I received them, the instructions read to start with 2 capsules once daily with full breakfast - so ended up being a 20 mg total dose each morning.

He’s still doing well. No negative side effects.

My next question is will this medicine help improve the abnormal liver enzymes and proteinuria improve with reducing the cortisol level?

[labblab]

Thanks so much for clarifying the dosage. As noted earlier, 20 mg. is still a reasonable starting dose for a dog weighing 17 pounds. And the fact that Rex continues to be doing well is an excellent indicator.

As far as the proteinuria and elevated liver enzymes, yes, we’ll be hoping to see improvement in both areas but it may take some time. As far as the liver enzymes, our experience here is that liver numbers do improve with treatment although they may never totally return to “normal” lab ranges. However, functionally, that doesn’t pose a great worry.

If elevated cortisol is the root cause of the proteinuria, then yes, we’ll also hope for improvement with trilostane treatment. If the proteinuria remains persistently elevated, however, your vet may well add in some additional treatments: an ACE inhibitor such as enalapril or benazepril, Omega 3 fatty acid supplements, and moderate restriction of dietary protein intake. Here’s a link to an IDEXX laboratory publication that discusses diagnosis and treatment of proteinuria, in general. You’ll see that the first and most important step, however, is treating the underlying cause of the proteinuria if that can be determined. So in Rex’s case, you’re doing exactly that with the trilostane.

https://www.idexx.com/files/proteinuria-dx-update.pdf

Marianne

[Bamafanroz]

So I took Rexie in for his ACTH Stimulant testing and electrolytes today. I’ll have results tomorrow and will share with you.

Clinically he’s doing well. No lethargy, or negative side effects. He’s drinking and pot tying less, too.

If he’s doing well....... should the dose be changed at this point? And what questions should I ask Vet to understand how best to manage this going forward. The bloodwork cost $305 today and he needs this testing repeated again in 2 weeks. Then 60 days, then every 90 days and more often again if dosing is changed at any point. Sigh.

Does this sound correct?

[Harley PoMMom]

So I took Rexie in for his ACTH Stimulant testing and electrolytes today. I’ll have results tomorrow and will share with you.

Clinically he’s doing well. No lethargy, or negative side effects. He’s drinking and pot tying less, too.

Glad he is doing well on treatment and we will be waiting anxiously with you for those test results!


If he’s doing well....... should the dose be changed at this point?

It is recommended that no dosage increase be done until the dog has been on Trilostane for 30 days, this is because cortisol can continue to drift downwards during the first 30 days of treatment, so if Rex is doing well on his current dosage than it shouldn't be adjusted. Now, if he would start showing signs of cortisol dropping too low than lowering the dosage is warranted.



The bloodwork cost $305 today and he needs this testing repeated again in 2 weeks. Then 60 days, then every 90 days and more often again if dosing is changed at any point. Sigh.

Does this sound correct?

Yes, Rex's cortisol will need to be tested again as you have stated. I also want to include a couple links from our helpful Resource Forum where you will find information about Trilostane/Vetoryl, particularly this thread titled: Cost Savings for Owners of Cushingoid Dogs (https://www.k9cushings.com/forum/showthread.php?9066-Cost-Savings-for-Owners-of-Cushingoid-Dogs) AND Trilostane/Vetoryl Information and Resources (https://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources)

Lori

[Squirt's Mom]

Did Rexie's result make it in yet?

[Bamafanroz]

Yes. Here they are:

Endocrinology
3/4/20 (Order Received)
3/4/20 1:11 PM
TEST
Cortisol - Pre ACTH
Cortisol - Post ACTH
Cortisol - Post ACTH #2
(Last Updated)
RESULT REFERENCE VALUE
0.7 μg/dL
1.8 μg/dL
1.7 μg/dL


Vet said this was too low and lowered dose from 20mg daily to 10mg daily. Vet said he consulted with 2 other Vets and a Vet Lab results expert at IDEXX and they all agreed that lowering dosage was appropriate so as not to induce Addisons.

Clinically Rexie is doing well. Running around, playing, eating, chasing cats, etc.

Should I be worried???

[Squirt's Mom]

Thanks for letting us know!

Dechra's protocol is to stop the med for up to 7 days then restart at the lower dose. So please keep a very close eye on him for any signs of low cortisol - loss of appetite, loose stools/diarrhea, nausea/vomiting. If you see any of those stop the med. Since he seems to be doing so well I don't feel tooooo bad about him continuing on the lower dose but do keep an eye out for any of those signs. Plus I know he has a really good mom and that helps a great deal. ;)

[Bamafanroz]

So..... I’ve been thinking about what you just told me. I’m going to stop the Vetoryl completely through the weekend. He’s doing great, but there is no need to push this so hard, so fast. I will never forgive myself if something happens to him. I’ll restart the Vetoryl at the 10mg dose on Monday night. He goes back for another ACTH Stim test in 12 days. Then we will have a better idea of how his cortisol levels are controlled on the 10mg dosage. I read in the Package insert that the cortisol can keep lowering even if dose is not increased. He’s at the very lowest “normal ranges” in both post injection doses. I’m just not willing to take the risk. I’ll keep you posted as to any changes. He is doing well clinically and it’s been fabulous to sleep all night instead of taking him 3 times a night to potty, but it’s not worth his overall health by any stretch.
Thoughts??

[labblab]

Hi again from me. Here’s the actual published warning that Dechra provides in their U.S. product insert for Vetoryl:


If the ACTH stimulation test is < 1.45 μg/dL (< 40 nmol/L) and/or if electrolyte imbalances characteristic of hypoadrenocorticism (hyperkalemia and hyponatremia) are found, VETORYL Capsules should be temporarily discontinued until recurrence of clinical signs consistent with hyperadrenocorticism and ACTH stimulation test results return to normal (1.45-9.1 μg/dL or 40-250 nmol/L). VETORYL Capsules may then be re-introduced at a lower dose.
It’s the post-ACTH level that is being referred to here. So technically, Rex’s cortisol has not fallen far enough to warrant completely stopping the medication. I see that his blood chemistries were also checked this week, and I’m assuming that the balance of potassium and sodium was normal?

If so, and since Rex is outwardly doing so well, I personally would probably just drop the dose as the vets have recommended, as opposed to stopping it entirely. You definitely don’t want his cortisol to drop any further, but right now it is still within the desired therapeutic range. I suspect that cutting his dose fully by half will allow for a fairly quick rebound even higher. It may even turn out that halving the dose won’t allow for sufficient control of his cortisol long-term. However, the good news is that a 5 mg. capsule of Vetoryl is also available if it turns out that Rex’s “sweet spot” is somewhere in between the two doses.

I certainly don’t want you to worry unduly over the weekend, or to take what feels like a risk to you. But I did want to explain why, at this point, the vets are likely advising you to just drop Rex’s dose rather than to stop it altogether, especially since he seems to be doing so well.

Marianne

[labblab]

One other note — I just noticed that you said you were planning to restart Rex’s Vetoryl on Monday night. Have you been giving the Vetoryl with dinner instead of breakfast? If so, what was the timing of his dosing prior to the ACTH test? He needs to be tested 4-6 hours after dosing along with a meal. If the timing of the test was different than that, the results need to be considered quite differently...

[Bamafanroz]

I gave the dose at breakfast for testing and since we have started Vetoryl. But I had an early morning meeting and could NOT get him to eat ..... but that’s typical of Rex...... he’s a weirdly strange eater from day one but that’s another story ��

So...... that morning I decided I could not give his med because he hadn’t eaten. Then..... I got the call later that day to reduce dose to 10mg. So I gave it to him at evening when he is used to eating and it’s so much easier for me to give it to him! My thoughts were to give at night until a few days before testing then start mornings again and then go back to evenings got the sake of my family’s sanity. Is this really bad??? I’m trying to balance and juggle everything .... family, stressful job, etc and just trying to do my best for all of us. Sigh. This is not as easy as it sounds..... one pill a day ��

[labblab]

You get a gold star for juggling, that’s for sure!!! And no, under the circumstances, your plan doesn’t sound crazy. If dosing in the evening generally works best, I say go for it. And yes, I’d normally just suggest switching to the morning again a few days before testing. However, if Rex refuses to eat in the morning, that does skew the test results. Vetoryl needs to be given with food to be metabolized properly, and therefore we assume that cortisol levels won’t be lowered as much if the Vetoryl is given on an empty stomach.

If Rex didn’t eat the morning of his test, this may mean that his cortisol level consistently runs even lower on normal days when he gets dosed with supper. If so, then yes, taking an actual break from the medication may be the safer route to go. And if he commonly refuses to eat in the morning, he might be a candidate for a different method of monitoring called a pre-pill monitoring test.

There is an alternative to the ACTH that is being offered especially in the U.K. It involves simply taking a baseline cortisol reading right before the administration of the regular dose of Vetoryl. It is not as widely known in the U.S., and it appears as though the method is still being “tweaked” for optimal use. But if Max commonly refuses to eat in the morning, it might be a good option to be considered if it’s possible for him to have blood drawn late in the day, before eating dinner and taking his Vetoryl. Take a look at this link re: “Pre-Vetoryl Cortisol Monitoring.”

https://www.dechra.co.uk/therapy-areas/companion-animal/endocrinology/canine-hyperadrenocorticism/vetoryl-monitoring-1?utm_source=directmailing&utm_medium=link&utm_campaign=PreVetorylCortisolSuperPage

This is a link you can also pass on to your vet. Unfortunately, the U.S. offices of Dechra aren’t offering official technical support for this monitoring method since it has not yet cleared the FDA approval process for published Vetoryl literature here. However, I think your vet can learn enough from the U.K. link posted above if it seems to be an option worth considering. All-in-all, it might work out better with your family’s overall daily schedule.

I surely don’t want to add to your burden by throwing in yet another variable. But in moving forward, you do need to let your vet know if Max won’t eat breakfast and you’re regularly dosing in the evening. We want to make sure that his monitoring will be as accurate as possible.

Marianne

[Bamafanroz]

Thanks so much for all of this valuable information.

I have never given the Vitoryl without Rex eating a full meal. This is why it’s so difficult. I have pressure cooked unsalted chicken, rice, geeen beans and yellow squash and have to heat it up and Then..... hand feed him one bite at a time in the am. This takes minimally 45 minutes. I wrap his Vetoryl in a piece of low fat cheese and he then eats like a champion.

I truly don’t have the time to do this every am. It’s not his schedule and he’s almost 12 years old.

Rex woke us up twice last night to potty. I am going to give him Vetoryl 10mg tonight at his full normal dinner time and then switch back to am dosing 3 days before next ACTH Stim rest. I am pretty sure my Vet is going to eventually use the pre-pill monitoring when we stabilize his Cushings and solidify a proper dosage. He knows I struggle with am meals but says we need to do it this way until we get treatment plan solidified.

Does this sound ok?

[labblab]

Yes, it does, and bless you for taking such good care of your boy!

Marianne

[Bamafanroz]

You are giving me hope and confidence that I am doing my very best for my beloved, Rexie! He is our heart and such a part of our family! I’ll do whatever it takes to ensure his proper care and treatment. I want his quality of life to be maintained and will continue to seek out great info from you to help me along this journey of having a cushpup!

I honestly don’t know where I’d be right now if I hadn’t found this wonderful group of knowledgeable people!!! Thank you from the bottom of my heart!

[labblab]

Ahh, thank you so much for your kind words, and you are most welcome! All of our members here are so special, including you and Rex!! Don't ever doubt that you are taking wonderful care of him.

I'm surely hoping that maybe you guys had a more peaceful night. We'll be anxious to hear as the weekend progresses.

[Bamafanroz]

OK....... I have an update and such good news to share! Rex is thriving on 10 mg Tristolane. His latest blood work shows that his liver enzymes are back in the low normal range, so are his platelets and cholesterol!!!! Proteinuria has been reduced to although still a little bit of protein in urine..... but Vet is thrilled and so am I! We are going to do another ACTH Stim test at the end of May to see if he may benefit from 10mg in the am with his breakfast and 5mg in the evening with a big snack. He has started asking to go out at night again but his water consumption is back to normal! The only issue I am having is getting my picky baby to eat!!! I have to make his dog food now and hand feed him to get him to eat enough at one time in order to administerer his Vitoryl properly! All in all....... no complaints here! I post this to give hope to all of you who are fearful of Tristolane. Remember..... Rex did not have many clinical signs at all, we caught this diagnosis very early as it was diagosed through abnormal blood work prior to annual dental cleaning. I can't recommend enough to have blood work done at each check up if you can afford it...... I feel and the Vet feels that Rex has many good years ahead of him because this was caught extremely early. I'm so happy! Thank you for helping and guiding me through this process and I am willing to be a resource to any of you that need help!

[Joan2517]

Wonderful update!

[labblab]

Oh wow, this is a great update, for sure! Thanks so much for taking the time to come back to let us know how Rex is doing. It really does brighten all our days to read this news. You all take good care, and please continue to stop by to check in with us, OK?

Marianne

[Squirt's Mom]

Good news and always good to hear! I hope Rex continues to do well!

[mariamicke]

I loved to hear that your dog was 10 when diagnosed and now so much older. My vet said my dog would not live as long because of this and he normally sees them only age another 2 years. This is wonderful news!

[LtlBtyRam]

I don't want to say any cases are the same so I won't. I will share with you my pup who passed away 4 years ago got her diagnosis a month before her 13th Birthday. It was early December of 2012 she passed mid April 2016. It wasn't always rainbows and roses, but got almost 3 1/2 years with her. We just got a diagnosis for Ginger and are deciding how to proceed. Hang in there, take it day by day, and appreciate every day.
Angela

[Bamafanroz]

Hello everyone! It’s been a bit over a year and I wanted to give you all a Rex update. He’s doing great!!

He will be 13 April 6 and is still stable and healthy at 10mg trilostane once daily. I love to share some encouraging news! He still acts like a puppy some days and even though it’s expensive.... Rex gets a ACTH stim test every 3 months and labs to make sure we are remaining healthy.

He’s had his dental and developed a subsequent mouth infection due to a suture reaction that required antibiotics after teeth having to be pulled. Other than that..... no issues.

I really feel that I have great veterinary care for Rex and they are taking great care of him!

I’m confident that we are going to have many good years left!

I don’t know what I would have done when he was first diagnosed without all of you

[Harley PoMMom]

What a wonderful update on Rex!!!!! Thanks so much for coming back and letting us know how well he is doing!! You're doing a great job with your precious boy!

[labblab]

“Ditto” to everything Lori wrote above!!! :D:D:D

Thanks sooooooooo much for returning with this excellent report — it cheers all our hearts when we hear that one of our K9C Cushpups is doing so well!

Best wishes to you and Rex, today and every day.
Marianne

[Squirt's Mom]

Good to hear from you again, Bama! And especially great to hear that Rex continues to do so well in spite of that little setback from the dental. It's stories like Rex's that help so many to follow know there is hope for their baby when they first come here so thank you so very much for coming back with this update!

Hugs and belly rubs!
Leslie

[Bamafanroz]

So Rex’s disease is progressing. He’s been on trilostane for 1 1/2 years now. The Vet just titrated his dose up to 20 mg. Per day.

He’s having accidents in the house now. I’m hoping that will improve with the dose titration…..

Does anyone know or have thoughts regarding urinary incontinence with disease progression?

[labblab]

Welcome back to you and Rex, although I’m sorry about the accidents he’s having in the house now. In looking back through your thread, I see that you had been having his cortisol level monitored on a regular basis. I assume your vet checked his cortisol, now, before increasing the trilostane dose? If his cortisol level had indeed been creeping up to a higher level, then hopefully the increased dose will take care of things.

Another possibility that occurs to me is a urinary tract infection since that can cause increased thirst and urination in any dog, with or without Cushing’s. Is that a possibility that your vet has ruled out via a urine test? If not, that’s something I’d want to ask your vet about. So do let us know about the results of any recent tests of either blood and/or urine, and then we can go from there.

Thanks!
Marianne