Cushings and Calcinosis Cutis

[Lhernandez0928]

Hi Everyone

My name is Lauren and my almost 12 year old Boston Terrier Bruiser was just diagnosed with Cushing's and also has terrible calcinosis cutis lesions that keep showing up in different places each week it seems. We are finishing up our second 30 day run of Triolstane at 34mg and will be taking him for his second ACTH test next week to see if this level is correct. Does anyone have any good tips/tricks or timelines for getting the skin issues under control. We have been told once the underlying condition is being treated the skin should clear up but my boy is so damn uncomfortable its heartbreaking. Any info would be helpful! Thanks so much.

[labblab]

Hello, Lauren, and welcome to you and Bruiser — we’re so glad you’ve joined us! We’ve had a number of members who have had to deal with Calcinosis Cutis, and it is indeed one of the most challenging symptoms of Cushing’s to manage. But it can be done, so please do keep positive thoughts flowing. Either I — or someone else — will stop by before long to give you some links to other threads that may provide some useful suggestions. As you’ve been told, though, reducing cortisol levels is usually the single most important weapon. That’s good that you’ll soon be having another ACTH monitoring test to provide guidance about any necessary dosing changes. Can you tell us what Bruiser’s previous ACTH numbers were? That’ll help us evaluate next week’s numbers, as well.

Actually, it’ll also help us a lot to find out a bit more about Bruiser’s overall health history, as well as any other symptoms in addition to the CC that are associated with his elevated cortisol. Thanks so much, in advance, for any additional info. And as I say, we’ll do our very best to help support you both during this treatment journey!

Marianne

[Lhernandez0928]

Hello, Lauren, and welcome to you and Bruiser — we’re so glad you’ve joined us! We’ve had a number of members who have had to deal with Calcinosis Cutis, and it is indeed one of the most challenging symptoms of Cushing’s to manage. But it can be done, so please do keep positive thoughts flowing. Either I — or someone else — will stop by before long to give you some links to other threads that may provide some useful suggestions. As you’ve been told, though, reducing cortisol levels is usually the single most important weapon. That’s good that you’ll soon be having another ACTH monitoring test to provide guidance about any necessary dosing changes. Can you tell us what Bruiser’s previous ACTH numbers were? That’ll help us evaluate next week’s numbers, as well.

Actually, it’ll also help us a lot to find out a bit more about Bruiser’s overall health history, as well as any other symptoms in addition to the CC that are associated with his elevated cortisol. Thanks so much, in advance, for any additional info. And as I say, we’ll do our very best to help support you both during this treatment journey!

Marianne

Hi Marianne

I will have to get exact numbers when my vet reopens next week but I’m pretty sure it was 16.or so. He has had symptoms for years. Excessive drinking peeing probably started two three years ago we had him tested a few different times and his levels were never high enough for a diagnosis. The skin issued showed up in September I want to say and we retested him then and he was officially diagnosed end of October. Started on 25 mg now on 34.

[molly muffin]

Hello and welcome. Be sure to keep track of the ACTh pre and post numbers. With cc, we find the best way to clear up is to get that post number down under 5.0ug. That is just where most of our members seem to see the best results with cc.

It is a long process unfortunately, as all the deposits already there, have to push up and out and that causes sores. So, keep areas, clean and dry and an antibacterial spray can help too.

[Lhernandez0928]

Thank you! So first test was 18.0 post ACTH Cortisol, next was 16.2 post. Just took third this morning so keep you posted on results Friday probably.

[molly muffin]

Okay so let us know what the result is when you get the ACTH back. Like I said, with the cc you are looking at trying to get that post number down under 5.0ug to help the skin clear up and no new calcium deposits to develop.

Crossing fingers!

[Lhernandez0928]

Latest test had his post number at 10.2 so we are headed in the right direction. Starting 45mg this week and will retest in a month. Fingers crossed this gets that post number down to 5!!

[Harley PoMMom]

We are finishing up our second 30 day run of Triolstane at 34mg and will be taking him for his second ACTH test next week to see if this level is correct.


Latest test had his post number at 10.2 so we are headed in the right direction. Starting 45mg this week and will retest in a month. Fingers crossed this gets that post number down to 5!!

Bruiser's Trilostane dose was increased to 45 mg from 34 mg, right? When a dosage adjustment is made it is recommended that an ACTH stimulation test be performed within 10-14 days to check where cortisol levels are at, and when the dosage has been increased this is especially important because of cortisol levels falling too low. Signs of cortisol dropping too low are: vomiting, inappetence, diarrhea, lethargy, or Bruiser just not acting himself, if any one of these symptoms are noticed an ACTH stimulation test should be performed right away.


Renee, a member here, is our resident expert when it comes to CC, she and her sweet Tobey have had a couple rounds treating that CC. I'm including a reply she posted to another member who was also dealing with CC:


Hi there,

Just checking in to share with you my experience and knowledge on CC.

I am sorry your girl is suffering so bad. I can truly relate, as my girl had lesions all the way down her back before we got things controlled.

Firstly - there is no cure for CC, other than lowering the cortisol. What I am unsure about with your girl, since her's is induced by pred rather than traditional cushings, is how low her cortisol needs to go. In a normal dog suffering from traditional cushings, the cortisol needs to come into therapeutic range of below 5 ug/dl and stay that way long-term. In a dog that has CC induced by pred, assuming traditional cushings is not at play, I would make a best guess that just getting off the prednisone will lower her into the appropriate range her body would naturally be at.

There are many different ideas about what may help or not help with CC. My personal opinion, through trial and error, is that DMSO is a complete waste of time. It smells horrific and I found absolutely no significant improvement that made it's use worthwhile.

Instead of DMSO, I would suggest a combination of tea compresses on the lesions, tramadol for pain (if that is an issue), and adding probiotics to her meals. You'll probably need to run a course of abx on occasion, as the lesions are highly susceptible to secondary infection. There is also a topical spray some have used, but I cannot think of the name off the top of my head.

Some people have used medicated weekly baths, but I felt that too much moisture was actually detrimental, and I never bathed my girl until she healed up somewhat. The lesions will crack, bleed, ooze, look raw and angry. Getting them wet is the last thing they need. You'll know you are heading in the right direction when they begin to dry out and flake, rather than ooze and be angry.

Keep in mind, even as you wean her off the pred, the lesions that are below the surface will continue to come up and break through. It will go through many stages. It will take months for the lesions to run their course and heal up, and that is only if you get her cortisol into proper range.

I see I've typed a lot, so I hope this can help you for now and gives you some hope.


And when you have some time on your hands, I'm providing a link to her thread: http://www.k9cushings.com/forum/showthread.php?t=5908&highlight=calcinosis+cutis

She also took pictures of her Tobey at various stages of CC, you can check them out here: http://www.k9cushings.com/forum/album.php?albumid=805[/URL]

Hugs, Lori

[Lhernandez0928]

Bruiser's Trilostane dose was increased to 45 mg from 34 mg, right? When a dosage adjustment is made it is recommended that an ACTH stimulation test be performed within 10-14 days to check where cortisol levels are at, and when the dosage has been increased this is especially important because of cortisol levels falling too low. Signs of cortisol dropping too low are: vomiting, inappetence, diarrhea, lethargy, or Bruiser just not acting himself, if any one of these symptoms are noticed an ACTH stimulation test should be performed right away.


Renee, a member here, is our resident expert when it comes to CC, she and her sweet Tobey have had a couple rounds treating that CC. I'm including a reply she posted to another member who was also dealing with CC:




And when you have some time on your hands, I'm providing a link to her thread: http://www.k9cushings.com/forum/showthread.php?t=5908&highlight=calcinosis+cutis

She also took pictures of her Tobey at various stages of CC, you can check them out here: http://www.k9cushings.com/forum/album.php?albumid=805[/URL]

Hugs, Lori


Correct his dosage was just adjusted from 34mg to 45mg. I didn't realize testing should be done again that soon I will follow up with vet. Let me also ask is the test supposed to be done after they have eaten with the medication or when they are fasted first thing in the morning? We have been fasting him with the tests but I feel like I saw other people say they are supposed to take meds that day with food.

[Squirt's Mom]

If Bruiser was fasted for the previous ACTHs then the results are not valid. :( Vetory (Trilostane) MUST be given with a meal, not a snack, in order to be absorbed and used by the body. Here is what the protocol states in the literature from Dechra, the manufacturer -

"After the administration of VETORYL Capsules with food, cortisol levels are most significantly suppressed for 3 to 8 hours. Therefore, in order to obtain results at the peak time of effect, the ACTH stimulation test should be performed at 4-6 hours post-dosing."

http://www.animalhealthinternational.com/animalhealthinternational.com/media/Animal-Health-International/Training/Dechra/VETORYL-Technical-Brochure-SPreads-v6-15-15.pdf

You can read more about Vetoryl here - http://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources

Sadly we have too often seen vets instructing clients to fast the pup before the ACTH. They simply do not know so it is up to us, the parents, to educate ourselves so we can be the best advocates for out babies possible - and we are here to help you with that education. Any time you have a question don't hesitate to ask....it may save you loads of wasted money for tests that are invalid and unnecessary stress on the pup. ;)

Hugs,
Leslie

[labblab]

Just a quick note to explain that Bruiser’s ACTH monitoring results would likely have been lower had the medication been given on a full rather than an empty stomach (so that the trilostane could be metabolized most efficiently). How much lower, we don’t know. But since you are now increasing his dose, the likelihood is that you’ll get a significantly lower result on a subsequent, nonfasted test. You’ll definitely want to watch him very closely during the coming days for any symptoms that his cortisol is dropping too low.

Marianne

[Lhernandez0928]

If Bruiser was fasted for the previous ACTHs then the results are not valid. :( Vetory (Trilostane) MUST be given with a meal, not a snack, in order to be absorbed and used by the body. Here is what the protocol states in the literature from Dechra, the manufacturer -

"After the administration of VETORYL Capsules with food, cortisol levels are most significantly suppressed for 3 to 8 hours. Therefore, in order to obtain results at the peak time of effect, the ACTH stimulation test should be performed at 4-6 hours post-dosing."

http://www.animalhealthinternational.com/animalhealthinternational.com/media/Animal-Health-International/Training/Dechra/VETORYL-Technical-Brochure-SPreads-v6-15-15.pdf

You can read more about Vetoryl here - http://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources

Sadly we have too often seen vets instructing clients to fast the pup before the ACTH. They simply do not know so it is up to us, the parents, to educate ourselves so we can be the best advocates for out babies possible - and we are here to help you with that education. Any time you have a question don't hesitate to ask....it may save you loads of wasted money for tests that are invalid and unnecessary stress on the pup. ;)

Hugs,
Leslie

Ughhhh so upset right now! So my vet said she fasts the dogs to rule out any possible interference in the numbers from Lipemia(high blood fat) in dogs blood that could skew the test results. I asked her to take a look at the articles as its hard for me to disregard the pamphlet from the drug company itself. Has anyone heard of this reasoning?


Lauren

[Lhernandez0928]

I don't know what to do now! Should I start him on the higher dose and test within a few days again? Should I do it fasted or not? I don't want to make my boy sick and my vet assured me the results are accurate she said she fasts them so there isn't a chance of lipemia (high fat in blood) interfering with numbers.

[Squirt's Mom]

I will be real blunt - your vet is wrong. If she wants to run other tests that would involve lipids or be affected by lipids then they need to be run separate from the ACTH....separate as on a different day. I'm so sorry. We see this often unfortunately. If his vet will not listen then I would recommend you search for another vet asap.

[labblab]

Yes, it does pose a dilemma. We have encountered other vets who conduct fasted monitoring tests, but specialized clinicians warn against doing so. It’s true that highly lipemic blood samples can skew the results for certain other blood tests, but experts have told us that this not the case with measuring cortisol. So as inconvenient as it may be, blood testing in Cushpups may need to be performed at different times: fasted samples for certain blood chemistries, and nonfasted samples for monitoring ACTH testing. Here’s an article by noted endocrinologist, Dr. Mark Peterson, that discuss this issue in detail.


Preparing for the ACTH stimulation test: Does the animal need to be fasted?

The dog or cat does not have to be fasted overnight, and lipemia does not appear to “clinically’ affect serum cortisol values. However, having a nonlipemic sample may be better in some situations, especially if serum cholesterol or triglycerides are being measuring on same sample.

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.

When a dog ‘s food is withheld, the absorption of trilostane from the gastrointestinal tract is decreased. This leads to low circulating levels of trilostane, resulting in little to no inhibition of adrenocortical synthesis. Therefore, serum cortisol values will higher when the drug is given in a fasted state than when it is given with food.

The higher basal or ACTH-stimulated cortisol results could prompt one to unnecessarily increase the daily trilostane dose. That misjudgment may lead to drug overdosage, with the sequelae of hypoadrenocorticism and adrenal necrosis in some dogs.

https://endocrinevet.blogspot.com/2011/03/whats-best-protocol-for-acth.html

Given Bruiser’s most recent post-ACTH of approximately 10, it seems somewhat unlikely to me that even had the trilostane been metabolized alongside food, that his result would have dropped clear down to the desired range no higher than 5. But I am not a vet and I have no way of knowing this for sure. As awkward as it may feel, I believe I’d print out this article, or perhaps even better, request your vet to contact Dechra (maker of brandname Vetoryl). In the past, their technical reps have been happy to explain to vets the need for nonfasted testing. If you do proceed with the dosage increase, I would want to retest, nonfasted, at that 10-14 day mark. Perhaps your vet can work with you on pricing under these circumstances, since truly she has gone against the testing protocol recommended by the manufacturers themselves.

Marianne

[Lhernandez0928]

Thank you so much everyone! I sent my vet the articles and she called me back and said let’s keep him at current dose and retest him not fasted at no charge to me to see if the end number changes. This way we can verify and not increase his dosage unnecessarily. I really appreciate all the help and I’ll keep you posted!

[labblab]

OK, your vet is a winner in my book!! That’s exactly the appropriate response. Sooooooo glad to hear that this will be the game plan!

[Squirt's Mom]

YAY for Bruiser's vet!! That is the mark of a great vet - willing to listen, learn, and admit when they may have been incorrect! She deserves a big pat on the back!

[Squirt's Mom]

And good for you mom for being a great advocate for your sweet baby boy! :cool::cool::cool::cool:

[molly muffin]

Excellent! It is so good to hear that a vet will step up and say, okay, so lets test appropriately, see where we are at, and then made decisions. Good for you for being a great advocate for Bruiser! whoo hooo!!!

[Lhernandez0928]

Hi Everyone

So we had Bruz on the true Vetoryl 30 mg not the trilostane generic he was previously onfor the last 10/12 days while we waited to retest with food and pill in system. I saw a noticeable difference in his energy and skin during this time. Just got the call and his post levels were 3.6!!! So now he should be in a good range for the calcinosos cutis to start healing in the next few months I think. I am so happy I could cry. So we stay this level with vetoryl and test again in a month or so.thank you so much for everyone’s advice and nice words. I will keep you guys posted.

Lauren

[labblab]

Oh Lauren, this is super good news!!!! Thanks so much for the update, and please keep checking in with us! We LOVE hearing good news.

Give yourself a big pat on the back for advocating for your boy, and give Bruiser a big hug from all his family here ;-). And your vet really came through for you, too. Congrats all the way around!

Marianne

[molly muffin]

Wonderful news! Okay so don't get discouraged about the skin, that take a long time to work it's way through. Keeping at the 3.6 level, should prevent any new calcium deposits from forming and anything that comes up now, should be what was already there, working their way up and out. So just a matter of keeping it all cleaned up and dry.

Yay for good news!

[Lhernandez0928]

Thank you!! Really appreciate all the kind words. So helpful to talk about this with others who have gone through it.

Lauren