New member Peaches -- Lysodren treatment

[PeachesMom]

Hi, I'm new to forum. I'm currently navigating treatment for my dog, Peaches. She is set to start Lysodren (Mitotane) this week. We have not had success with trilostane, so it's time to try something else. This website and forum have been extremely helpful to me. Reading about other dogs' experience (and success!) with Lysodren has helped me feel more confident in this next step. And the resources page, particularly about the loading dose period of Lysodren, is so informative. Thank you for creating this supportive space!

~Margaret & Peaches

[labblab]

Hello Margaret, and welcome to you and Peaches! You'll see that I took the liberty of making a copy of your post on our general "Checking In" thread and used it to start a brand new thread of your very own. This way, it'll be easier for us to talk with you directly. We're so glad to hear that you've already found some helpful info here on the forum, and we'll be anxious to support you two as you now launch into Lysodren treatment. As I'm sure you've gathered, most of our current members are now using trilostane. But we also have some longterm staffers who are experienced with using Lysodren on their own dogs in the past. So I'm very hopeful they'll have the chance to stop by soon to meet you and to offer their guidance as you move forward.

If you'd care to tell us a bit more about Peaches' overall health history as well as her experience with trilostane, that'll be a help to us all. In the meantime, once again welcome to you both!

Marianne

[PeachesMom]

Hi Marianne and Everyone on the forum! Thanks for the warm welcome.

I'm happy to share more about Peaches, from what our vet has told me Peaches has a somewhat unusual presentation of Cushing's. I'll start at the beginning, and try to keep it concise and easy to follow:
Peaches is a 9 y.o. Huskie/Shepherd/misc. mix. We adopted her at 6 y.o. after her previous owner passed away, so I don't know a lot about her prior history - but from the start at age 6 we've been managing chronic gallbladder issues with Ursodiol and a low dose antibiotic that she is one forever to treat long term damage to her GI track from chronic distress (likely the untreated gallbladder and human food diet from her previous home). She also takes joint supplements, probiotics and Proin (for chronic urine leakage). With that long list of meds, it may seem Peaches wasn't healthy, but about 6 months after her adoption we had sorted everything out and she was doing great with this maintenance routine. She had energy, a good appetite, and an adorable personality.

In January 2023 suddenly she could no longer jump into the car. She didn't want to walk very much. She was lethargic. And then her hair began falling out in huge chunks. Our vet ran many tests due to her complex health history, it took weeks (maybe about two months) but eventually they concluded Cushing's disease and Calcinosis Cutis. Her calcinosis cutis became extreme pretty quickly, at its worst I would estimate it covered 30% of her body. Some of the areas developed a very hard shell-like texture. It almost feels like knocking on wood on a patch that covers her hips.

Our first treatment approach was trilostane, prescribed by her primary vet. We completed several months of ramping up the dosage with little results. Additionally, she was becoming so weak that she was hitting her elbows so hard the were getting injured and infected, so we were simultaneously treating those.

Around July this summer, our primary vet recommended we transfer her to a specialist because it was clear that increasing her dosage wasn't yielding results. Her ACTH tests were still showing results out of normal range, but not wildly high compared to how intense her clinical symptoms were (I can look up numbers later and post them if anyone is interested).

It took a while to get into a specialist (as many of you know they are hard to find and booked out for months). Luckily we found a specialist that was very experienced. After her own testing, our specialist said she thought Peaches was in a small minority of dogs with Cushings who are sensitive to the many other hormones and chemical processes happening within the body during the cortisol production process - not just the cortisol itself. She explained that Trilostane only blocks the cortisol at the very end of the production process within the body. So for the majority of dogs Trilostane is the best option because it has fewer side effects and most dogs only need to block cortisol itself. However, for dogs like Peaches they need to use Lysodren to shrink the adrenal glands and limit the entire process.

Tonight we are starting her first dose of Lysodren. I'm happy to share more and share some updates in case it helps anyone else. Cushing's has been a real journey for us. I'm feeling nervous about the possible side effects of Lysodren, but hopeful that it will help her and the benefits will be clear. Thanks again for creating this helpful, supportive and informative space!

~Margaret & Peaches

[Harley PoMMom]

Hi Margaret,

Welcome to you and Peaches, I am so sorry for the reasons that brought you here but so glad you found us and we will help in any way we can.

One important thing, there needs to be a wash-out period before switching from Trilostane to Lysodren and vice-versa, the reason is that Trilostane enlarges those adrenal glands and makes them more sensitive to the mode of action of Lysodren, at least 30 days is preferable.

We would really appreciate if you could post all test results, you only need to include those that are abnormal, and we are especially interested in any tests that were performed regarding the Cushing's...thanks!

How much does Peaches weigh? And what is the loading dose of Lysodren that the vet prescribed? Did the vet give you any predisone to keep on hand?

Bless you for giving Peaches a loving home, she is a lucky girl to have you as her Mom!

Hugs, Lori

[PeachesMom]

Hi Lori and Everyone,
Peaches usually weighs about 57 lbs. At the height of Cushing symptoms she was in the low 60s lbs range - which was surprising because her muscle wasting made her look simultaneously gaunt in the face with very thin limbs. She did have some indications of inflammation and potential thyroid issues in her initial bloodwork, but I don't have those results with me. She's also had at least two ultrasounds, both indicating enlarged adrenals, some gallbladder "sludge" and ruling out other issues as all else appeared normal. The gallbladder sludge had been there since we got her, but was looking slightly worse now. It had improved for a few years on Usodiol for treatment. The enlarged adrenals were different than they had appeared on previous ultrasounds over the years.

Here are the results I have on hand today (I'm planning to pick up more records next time we're at the vet)

April 3
Initial LDDS test
Pre DEX: 4.8 ug/dL
4 hr Post Dex: 2.5 ug/dL
8 hr Post DEX: 4.9 ug/dL

**the following ACTH results all take place while Peaches is on Trilostane. We have a local compounding veterinary pharmacy, so she was getting pills made according to exactly what her vet prescribed. We were starting with low doses and slowly increasing. I haven't kept all her pill bottles, but when I pick up her full records I can share dosing. Each of the following tests is 10 days after a dose increase.

April 18
Pre ACTH: 5.2 ug/dL
Post ACTH: 9.5 ug/dL

May 4
Pre ACTH 4.7
Post ACTH 8.2

May 23
Pre ACTH: 2.8 ug/dL
Post ACTH: 7.1 ug/dL

June 8
Pre ACTH 4.4 ug/dL
Post ACTH 6.2 ug/dL

June 23
Pre ACTH: 4.8 ug/dL
Post ACTH 7.1 ug/dL

** At this point our primary vet referred us to an Internal Medicine Specialist. Although there was room to keep ramping up the Trilostane dosage, we agreed that Peaches was showing so little clinical improvement on her symptoms it was time to see a specialist and consider alternatives.

August re-check of ACTH by IMS
Pre ACTH: 4.1 ug/dL
Post ACTH: 7.2 ug/dL

We also did another ultrasound and bloodwork to recheck and confirm diagnosis.

IMS ordered detox period from Trilostane, which we've completed. The loading dose for Lysodren is 500 mg twice a day. We'll do this for up to 10 days. We are watching for a list of symptoms that would indicate stopping early, and administering a rescue dose of Dexamethasone if needed.

Today is Day 3 on Lysodren. So far she's had none of the warning signs. If anything she's a little more interested in walking, sniffing and getting attention from us than she was before starting the meds. So hopefully that's a good sign. I'm watching her like a hawk though for any changes in food, water intake, lethargy, diarrhea etc - any of the things that indicate we don't need the full 10 days on loading dose.

Has anyone else in the forum had to switch from Trilostane to Lysodren?

Hugs to all the Cushing pups out there! This disease is a tough one to get under control.

~Margaret

[Harley PoMMom]

Hi Margaret,

Peaches' loading dose is a bit low, I calculated her weight at 57 lbs, the loading dose for Lysodren is 50 mg/kg/day, divided and given BID (twice a day) which, to my calculation, is 1295 mg, and divided is 647 mg BID. Another important factor is that the Lysodren has to be given with some fat in the meal. I used to wrap it in either sliced cheese or cream cheese, I also let my boy eat part of his meal and then give the Lysodren and then let him finish his meal. For dogs who may experience some gastric upset from the medication, a dose of Pepcid AC can be given to the dog about 15 minutes to half an hour before the meal with which the Lysodren is given.

You're doing a great job!!! Keep us updated, please!

Hugs, Lori

[Squirt's Mom]

Hi, welcome to you and your sweet Peaches!

I am an oddball in that I prefer Lysodren to treat Cushing's UNLESS the dog has the adrenal form...then Vetoryl is usually best because of the need to continually increase the dose over time. Once Peaches is loaded and she is settled on her maintenance dose you can expect things to go fairly smoothly from then on. Unlike with Vetoryl, a dog on Lyso rarely needs a dose adjustment. This means the cost is less on you (less testing) and less stress on Peaches (less testing).

Lori is correct about the dose...it is low but the IMS may be thinking that she could be one that is sensitive to meds period so a lower loading dose might be best in that case. It can take longer to load but that's ok. Better to be a bit longer in the loading phase than risk a negative reaction.

The main thing with this drug is to be very observant during the loading phase so you catch the often subtle signs that the load has been achieved. That can be as simple as looking up from the bowl of food when called or walking away from the water bowl after a few swallows. But you are doing a great job so far and I have no doubt Peaches is in great hands.

I am so glad you found us and hope to learn more as time passes!
Hugs,
Leslie

[PeachesMom]

Hi Lori, Leslie and everyone,
All good suggestions! And I think her IMS is being somewhat conservative because we've seen how sensitive Peaches' system is to both the medication and her ACTH numbers. I have an update since my last post:

Yesterday I noticed she left one kibble behind in her bowl during breakfast and she waited longer than usual after eating to take a drink of water. I know that sounds like a small change, but for her it's unusual. Normally she licks her bowl when she's done eating. I called our IMS and reported the change, she said to stop medication, and bring Peaches in tomorrow for bloodwork. IMS said no rescue dose of dexamethasone was needed unless other symptoms develop.

She had the same eating habit at dinner, left just one kibble behind. And throughout the day she would accept treats that were brought to her, but she wouldn't go out of her way to get them. Again, unusual behavior for Peaches.

The next morning, she only ate about 1/3 of her food for breakfast and at this point it had been 24 hours since her last Lysodren pill. We were on our way directly to the IMS after breakfast, so i held off on the rescue dose. The IMS checked her out and completed the ACTH test. So now we wait for results in a few days. I'll keep you posted.

Also, Peaches at her whole dinner and seems more herself. I'm still watching closely though and reporting any changes to the IMS.

In total, we did 7 days of the loading dose. I'll let you all know when we have results.

Also, I'm curious - is anyone else on the forum currently using Lysodren? It seems most people are talking about using it before Trilostane was available. I'd love to know who (if anyone) is currently using Lysodren. Just curious if there are any similarities among the dogs that do best on Lysodren rather than Trilostane.

~Margaret

[Harley PoMMom]

Kudos for being such a great observer of sweet Peaches!! I'm so glad you stopped the Lysodren and had an ACTH test performed. We'll be waiting anxiously with you for those results!

Hugs, Lori

[labblab]

“Ditto” to what Lori said above!! And as far as your question about Lysodren use, I’m afraid I’m not aware of any other members who are currently using it for treatment. As you’ve noted, during the last few years, trilostane (Vetoryl) has become the most common medical treatment worldwide. Even though overdoses of both medications can cause cortisol levels to fall too low, I think the belief among many vets is that there is less risk of inducing permanent adrenal oversuppression with trilostane. Also, there have been periodic shortages in obtaining Lysodren because it is really pretty much an orphan drug at this point with no human use and very limited veterinary use.

Having said all that, historically we have had members who have done very well using Lysodren. And for dogs who may suffer symptoms from elevated adrenal hormones in addition to cortisol, Lysodren may be the better choice because it can lower certain other adrenal hormones whereas trilostane may instead elevate some of them. As far as I know, the jury is still out as to the actual genuine clinical significance of other elevated adrenal hormones. But that *may* be a situation where Lysodren offers greater symptom relief.

Marianne

[Squirt's Mom]

You done so good, Mom!! :cool: Way to go!!! :cool: Sounds like things are going pretty good at this point and that is wonderful for you both. Looking forward to seeing the ACTH results and hoping it's time for maintenance to start.

Hugs,
Leslie