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Thread: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

  1. #1
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    Default New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Hi everyone,
    Our vet has just told us that our sweet little Mia (11 year old jack russell terrier mix) likely has cushings. She started having the classic symptoms in November and has deteriorated since : excessive thirst (like 5-6x her normal amount) and urination, accidents (v uncommon for her), muscle loss (canÂ’t jump up on bed or couch anymore), panting, and loss of her beautiful fur. Over the past 2 months, she has also started developing these awful scabs and hard bumps all over her body (looks just like pictures of calcinosis cutis) and theyÂ’ve gotten worse and worse. We gave her an anti fungal bath today (per vets instructions) and a bloody flap of skin just peeled off her head, it was awful.
    The biggest challenge is that we live overseas in a country with very limited health facilities, and basically only 2 vets. They ordered blood work (which took 3 weeks to get results) and found sky high levels of cortisol and ALKP and GGT, which led the vet to conclude - along with all the symptoms - that itÂ’s cushings. They donÂ’t have the capacity to do any more complex tests, and they donÂ’t have access to the meds normally prescribed for cushings. They are basically giving her vitamins, fish oil and researching ways to support her liver functions.
    We are heartbroken and not sure what can be done to help Mia, given all the constraints. (We are here for a couple more years, and donÂ’t think she would make it on long flight back home anyway.). IÂ’ve been reading the posts and this seems like such a knowledgeable and supportive community. If anyone has any advice on how we can make her more comfortable (esp the CC) or any other suggestions, I would be grateful. Thank you.

  2. #2
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Hello, and welcome to you and sweet Mia. I’m so sorry to hear of her symptom progression — there’s nothing worse than feeling helpless in the face of worsening illness in our loved ones! Mia does indeed sound as though she suffers from the classic symptoms of Cushing’s, including calcinosis cutis. And sadly, we’ve found that CC can be the single Cushing’s symptom that can create the most physical discomfort for a dog. However, here’s a link to a thread here that hopefully may offer you some useful suggestions in that regard:

    https://www.k9cushings.com/forum/sho...eatment-thread

    From the experience of our members, though, we’ve learned that it’s very difficult to gain significant control of the CC unless cortisol levels are lowered significantly. In that vein, I’m wondering if it might be possible for your local vets to obtain access to Vetoryl (the Cushing’s med that is most widely used worldwide), even though they’re not currently aware of it. Dechra is the company that manufactures Vetoryl, and here’s a link to their worldwide distribution map:

    https://www.dechra.com/dechra-busine...ibutor-network

    You can check this map to see whether you’re in a country that has access to the medication. If so, there’s contact information provided that might allow your vets to actually obtain Vetoryl on your behalf. If so, there is a new Vetoryl monitoring protocol that only requires a periodic single blood draw that simply measures a dog’s cortisol level immediately prior to taking their daily Vetoryl capsule. So if you can just get your hands on the medication, the monitoring may not be that difficult for you.

    We can talk about all this in more detail later on — the first step would be checking the map and finding out if you’re living in a country with a distributor. So take a look and let us know, and we can continue from there. And once again, welcome to our family!

    Marianne

  3. #3
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Dear Marianne,
    Thank you so much for the quick reply, warm welcome and helpful information. It’s such a relief knowing there are so many out there who are so supportive and knowledgeable (though sadly I’m sure that knowledge is gained through difficult experiences). The distribution map shows that we have access to vetoryl here in east Africa! I didn’t think it would be possible to monitor/adjust though given the limitations of the labs (the vet needs to send out the blood work and it takes several weeks to come back)... but perhaps I’m wrong about that given the new protocol you mentioned? We will raise with the vet and hopefully he can offer some insights. (They don’t seem to have any experience trading cushings). Thank you!

  4. #4
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    It’s so good to hear right back from you, too! Here’s a link to a chart that discusses the new monitoring protocol that I’m referring to:

    https://drive.google.com/file/d/1gqUchP2gvFIyG8udZgNS1bWfppWW6fin/viewfbclid=IwAR2DelBbsQeFErzcG9ZODzfWJnFdlbMmZz49p 8wpQPcumL9Y6RtbrcaKAE8

    The chart is embedded in this more extensive post about general guidelines for the use of Vetoryl (trilostane):

    https://www.k9cushings.com/forum/sho...TH-Stimulation

    A lengthy delay in getting blood test results would obviously be far less than ideal. But given your circumstances and your description of Mia’s worsening symptoms — most importantly, the worsening CC — it may be a risk that you’d be willing to take. I don’t mean to scare you, but we’ve had dogs here who have had to be euthanized due to the discomfort caused by uncontrollable CC. If I was in your shoes and I could actually obtain Vetoryl there in Africa, I think I’d be tempted to go ahead and start with a very low dose while watching very carefully for ill effects. If any appear, you can always discontinue the medication, especially during the time period that the blood test is pending. Please know that I’m not a vet myself, and normally I would not recommend treatment without the benefit of speedy testing. But I do think your situation is out of the ordinary. So I’d definitely show this info re: Vetoryl to your vet, and see whether treatment may be a possibility.

    Do let us know about any additional questions. We can supply you with more info and more links if you think that might be helpful. Dechra is also very happy to directly consult with vets. That might be the very first step, if your vet is willing to contact them for additional info and support.

    Marianne

  5. #5
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Thank you, Marianne! Showing this info to our vet and seeing what may be possible sounds like a good first step. Fingers crossed.

  6. #6
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Hi Marianne,
    The vet just contacted us and said they got Vectoryl and would like to start Mia on it ASAP! My concern is that they only have 30 mg capsules (leftover from another patient, they can’t import anymore. And when I reached out to the distributor, they confirmed that it’s not available here...despite what the map says). Mia is only 8.5 kg and the vet knows that the recommended dosage to start her on would be 17 mg or so. But he says it’s important to get some meds in her asap given her condition, and strongly recommends we open up/split the capsule and give her half the powder (buried in some minced meat) once a day. While we all keep working on trying to import at the right dosage.
    This will of course be very imprecise. (And given the lag time and inability to get blood work done, we know it will be a big challenge to try to fine tune the dosage going forward as well.)
    I know it’s not fair to ask this of you since you’re not a vet, but I would love your thoughts on this. Thank you!
    Last edited by Mia’s Momma; 04-08-2021 at 07:23 AM.

  7. #7
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Oh my, that’s a tough call. I have a couple of questions for you in the midst of thinking things over. How many 30 mg. capsules does your vet have? Has your vet been able to contact Dechra directly to ask about dosing and distribution? Was it Dechra or somebody else that *you* were able to talk to yourself? It just seems very odd that Dechra would include your part of Africa on their distribution map if Vetoryl truly isn’t available there...

    Off the top of my head, here are a couple of thoughts. Dechra specifically warns against opening capsules and dividing powder. Apparently there are several reasons. First, they don’t want humans exposed to the powder through their skin or inhaling it (so gloves and a mask should be worn if you do plan to open capsules). Also, as you already know, it’s impossible to know for certain whether the active ingredient is evenly divided among the powder, so dosing is inaccurate. Finally, it seems as though the medication may not be metabolized as efficiently because it’s not intended to be released and absorbed into the body until it reaches the stomach.

    So to me, whether or not it’s worth it to take the risk would likely depend on how many capsules you’d have at this point, and also what the likelihood is that you’d ever get any more Vetoryl of any dose. If you don’t have many capsules on hand and you’re not likely to get more, I don’t really see the point of giving Mia a few doses that may not even be accurate. In order to be therapeutic, she’d need to remain on an appropriate daily dose far into the future without interruption. So if it was me, I’d want to have a better idea as to the longterm gameplan before launching into dividing those capsules that you may have on hand.

    I’ve just been scouring Dechra’s international website to try to find some decent and accessible contact information for your vet, but they no longer seem to be very user-friendly in that regard :-((. If the country you’re in is part of the British Commonwealth, though, maybe Dechra U.K. or Dechra Australia would be willing to field some questions. Or if you want to tell us here what country you’re in, I can even try calling Dechra U.S.A. to see if they have any useful suggestions for you.

    Circling back to my initial questions, though, do let us know about the number of capsules and your contacts thus far, and then we can keep thinking and talking.

    Marianne

  8. #8
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Thank you for your reply. It’s so helpful to have someone knowledgeable to bounce things off of. .I feel like we are flying blind here and are grasping at straws, anything to alleviate little mias suffering.
    So, yes, I was in contact with a Dechra representative (regional sales rep in Europe responded to my email) who told me that Vetoryl is not available in Tanzania (where we are posted) or neighboring countries. I even shared the distribution map, but they said it was inaccurate.

    Our vet says they have several months supply of the 30 mg capsules, but he is not optimistic they can get more. While he can write the prescription for it, there is no one in country who can fill it and they don’t have access to a distributor (he says this is only the 4th case of cushings vet seen in their practice, and they are the main - if not only - clinic around). I am talking with some friends though and may be able to get a vet in the US to help write a prescription matching the local one, in which case we would be able to order online through petco or chewys or one of the other online places that can mail to us. So, in sum, I think it is possible for us to get more. (Adjusting dosage and getting the right one in a timely manner is another issue, since mail takes at least several weeks.)
    The vet was very insistent that we give this a try and was pretty sanguine about opening up the capsule (I’m more nervous about it, but am willing to try anything that may help, as long as it doesn’t hurt her). I think he was alarmed at mias rapid deterioration. He is apparently consulting with a colleague in the UK, but I don’t know that he’s in touch with dechra itself.

    Thank you so much for your time in trying to help us sort through this. Little Mia (and her momma) are so very grateful!

  9. #9
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Oh you are so welcome! But that's what we're here for, and Mia is so very lucky to have a momma who's willing to work so hard to help her!!

    For all the reasons I listed above, opening the capsules is not a preferred method of dosing. However, having said that, over the years we have seen a few vets who have gone ahead and recommended doing that when other options are not available. So this would not be a "first." In a sense, I view it kind of like a clinical trial for a human patient who has run out of formally approved methods of treatment available to them. You have no guarantee that the treatment will work, and you may even risk doing harm. But when no other alternative is available, the risk may seem worth taking. Given Mia's rapid and significant decline, that may indeed be the choice you make.

    In Mia's case, one thing I don't worry about is the accuracy of the Cushing's diagnosis even though your laboratory testing options are restricted. Her symptom profile is classically "Cushing's," and the apparent calcinosis cutis is kind of the frosting on the cake. Even though it requires a skin biopsy to definitively diagnose CC, what you've described with Mia is entirely consistent. And when CC is present, a Cushing's diagnosis is essentially guaranteed. So I do think she has Cushing's, and I don't think she will have the opportunity to improve unless her cortisol is brought under control. So there you have it.

    My heart absolutely goes out to you in making these decisions, though. My own Cushpup (my avatar) was a sweet Lab boy who was profoundly affected by his disease. I watched his quality of life disintegrating in front of my eyes. He didn't have CC, but the thirst/urination/appetite, the muscle loss, the balding flanks, the constant search for a cool place to lie down, his growing inability to jump or climb stairs or even to walk for more than a few steps without halting and panting - he was losing everything that made for a "dog-worthy" life. He was actually the first trilostane patient for our specialist here in Atlanta, and so, in a way we were entering a clinical trial of our own. Dosing levels were a lot higher back when he was treated in 2003, and the whole protocol was somewhat different. There was a lot of uncertainty, and I knew we were taking a risk by trying what was then a very new medication. But without treatment, I knew we'd soon be losing him anyway. And so it was a risk I was willing to take to try to make him better. And better he was, for a while. In the end, we lost him to what we assume were the effects of his enlarging pituitary tumor. But I'll never know for certain that we also didn't make mistakes along the way with his medication, perhaps overdosing him to an extent that may have caused some damage. I will always wonder, and I still have moments of such regret and even guilt. Still, if I was presented with exactly the same situation once again, I believe I'd still have opted to treat him in the way we did -- to give him what I'd hoped was his best chance to regain his health.

    I'm being so very long-winded here because I want you to think carefully about how you're guessing you'd feel if it turns out that opening up the Vetoryl capsules turn out not to help Mia, or even if they were to make her more ill. It's impossible to know in advance how anything will turn out -- if only we had that crystal ball!!! But as long as you accept that it's a gamble going in, then it may be a gamble that feels worth taking. I know it feels like an awesome responsibility, though.

    As far as perhaps enlisting the help of some friends with importing Vetoryl, that would be great. In that regard, here in the U.S. there is an additional option of obtaining custom-compounded doses of trilostane (active ingredient in Vetoryl). Specialty veterinary compounding pharmacies do exist, and would offer a wide range of dosing possibilities. I don't know whether any veterinary pharmacy here in the U.S. will ship medicine outside of the country, whether it be somebody like Chewy or a compounding pharmacy. But if you can get an American vet to rewrite the Rx and the medicine could be delivered to a friend here in the U.S., then hopefully the friend could send it on to you even if the med couldn't be mailed directly. I know, this is all a lot to think about! But kudos to you for taking all these steps to take the best possible care of your little girl!

  10. #10
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    Default Re: New here, 11 year old sweet JRT mix just diagnosed with CushingÂ’s

    Thank you for all the thoughtful feedback. Sounds like you had to make some agonizing decisions; I am so sorry. We are at that same point right now: she is disappearing before our eyes (we are up most of the night trying to prevent her from scratching b/c of the CC, and we inevitably fail to stop the one scratch that results in a bloody mess); we fear we will lose her very soon if we don’t try something. So, we are willing to take the risk....and live with the consequences, knowing how uncertain the outcome is. So, we opened up a capsule this morning and gave her the first “dose”.
    Thanks for the advice trilostane - we are now in an all-out search for a vet in the US to rewrite an Rx. (We actually have a “US address” since we work for the govt, so if they can write a Rx, the rest is “easy”, if slow.). Keeping fingers crossed that all goes well!

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