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Thread: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis - Lucy has passed

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    Default Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis - Lucy has passed

    Hello everyone. I am so happy to have found this group! I feel relieved to be able to intereact with people on the same situation as me. This disease is devastating me psychologically, physically and financially! I can't sleep though the night for months now, I've been exhausted! My baby girl asks me to open the door for her several times a night... And then I need to refill her water bowl... We just moved from Oregon to Florida and within 3 days here her back started to break open with an infection and skin falling... So I had to find a new vet who immediately diagnosed her with pyoderma and started her on cefpodoxime. After almost 3 week of it I decided to see a dermatologist who diagnosed her with calcinosis cutis and told me that we should test for Cushings because that's the most common cause for calcinosis cutis... And the dermato discovered that the bacteria was resistant to cefpodoxime and changed her to marbofloxacin.

    The generalist vet decided that we should do a ultrasound instead of the regular hormonal tests, but before we had already diagnosed her with low urine density, high liver enzymes and high cortisol to creatinin ratio...

    I have spent SO much money on diagnosing her... This is such a nightmare!

    She weighs 125 lb and I just started her on vetoryl 60 mg daily. SInce she is also on marbequin I didn't want to have her on such strong medications at the same time so I have given her only 60 mg daily for the last 3 days. Tomorrow I will start her on it bid as prescribed and hope her body can handle it all....

    I also read an article that dogs heavier than 30 kg don't need to have their dose adjusted per body weight since a max dose of 30 mg bid seems to be already sufficient... Any one knows about that?


    Here is the photo log I have been keeping of Lucy: https://photos.app.goo.gl/2HdwYBWtKxEgW3kr8

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    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    Hello, and welcome to you and Lucy! I surely understand how worried you are about your girl, and I’ll return again a bit later on to add some more thoughts. However, I wanted to quickly address your dosing question before you increase Lucy’s dose to 120 mg. for your daily total. You are correct that several prominent researchers/clinicians recommend administering a daily total less than the formula of 1mg. per pound for larger dogs. I’m including below a couple of links for you to review. The first is to a general resource thread re: Vetoryl treatment. Embedded within that thread you’ll find the quote that I’ve added below, as well as a link that specifically addresses the administration of smaller doses to larger dogs.

    I do realize that Calcinosis cutis can become a grave treatment issue if it flares out of control, and for that reason, significant reduction of circulating cortisol is an important goal. I’m so sorry to see your photos of Lucy’s skin problem and to recognize the discomfort it must bring to her. However, *over* suppression of cortisol is also a very serious concern. If Lucy were my own dog, I believe I would want to ask the vet to hold off on the dosing increase at least until the first cortisol monitoring test is performed, ideally at the two-week mark but no later than the one month mark. We’ve come to learn that cortisol levels can continue to drift downward throughout the first 30 days of treatment, even when the dose is left unchanged. So before increasing her dose further, I’d first want to know how the 60 mg. dose is affecting her.

    But please do review this information on your own, and feel free to ask additional questions. As I say, I’ll also plan to stop back by later on. In the meantime, once again, welcome to you and Lucy!

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

    FOR MEMBERS WITH LARGER DOGS, studies, as well as the vast amount of experience with Vetoryl acquired since FDA approval, clearly shows that many larger dogs over 44 lbs (20 kg) are quite sensitive to the drug, requiring much smaller Vetoryl (trilostane) doses. UC Davis, as well as other premier veterinary teaching institutions, have established their own much lower dosing protocol for their larger patients. If you have a larger dog, please see “Vetoryl (trilostane) – Larger Dogs Smaller Doses” link can be found at the bottom of the page. This is very important because most general practice vets are not aware of this critical development and unfortunately, Dechra has not revised their dosing recommendations for larger dogs as of this writing.
    https://www.k9cushings.com/forum/att...1&d=1659215316

    Marianne

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    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    Hi and welcome from me, too. My Gable was 90 pounds and I only started him on 40mg which we did have to lower to 30 and then 10 because his cortisol dropped too low. He was down to 5mg when he died from an acute attack of pancreatitis. It's very important to keep up with the testing and watching for signs of the cortisol dropping too low, too fast, and it's better to start low and increase the dose if needed. My vet was willing to work with me on the lower doses and Gable did well for a pretty long time and was 12 when he died, four or five years after being on the Vetoryl. Please don't let your vet talk you into higher dosing.

    Joan
    Joan, mom to my Angel Lena, Angel Gable, Angel Phoenix, Angel Doree, Cooper, Sibble, and now Raina.

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    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    Quote Originally Posted by Joan2517 View Post
    Hi and welcome from me, too. My Gable was 90 pounds and I only started him on 40mg which we did have to lower to 30 and then 10 because his cortisol dropped too low. He was down to 5mg when he died from an acute attack of pancreatitis. It's very important to keep up with the testing and watching for signs of the cortisol dropping too low, too fast, and it's better to start low and increase the dose if needed. My vet was willing to work with me on the lower doses and Gable did well for a pretty long time and was 12 when he died, four or five years after being on the Vetoryl. Please don't let your vet talk you into higher dosing.

    Joan
    Thank you SO much for sharing! I have been reading so much about it and just don't feel like I can give her recommended dose. I think she is willing to work with me though. Your final dose was approximately 0.1 mg/kg per day, which is the dose Dr Feldman recommends "all dogs treated with trilostane begin at about 0.1-0.5 mg/kg, twice daily. The 0.3 to 0.5 mg/kg BID dose is for dogs less than 15 kg and the 0.1 to 0.3 mg/kg BID dose is for dogs weighing more than 20 kg".
    Thank you so much for your input.

  5. #5

    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    Hello Marianne, you are so kind and thoughtful to be answering for all of us on this forum. I hope you know the light you bright on our lives to be able to discuss this incredible hard subject with someone knowledgeable. I have read all the sources you recommended, as well as few other ones. I will try to change Lucy from the 60 mg caps/ day to the 30 mg bid. And probably push to check her after 20 days? The vet wants to do it at the 10 days mark. Thank you.

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    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    Your vet is correct with the 10 day check. We want to know early on how well the treatment is working. NO CHANGES need to be made at this check tho. Only at the 30 day test should increases, IF needed, be made. The testing schedule for this drug is 10-14 days after starting, 30 days after starting (2 weeks after the first one), and 90 days after starting IF all is going well. IF things maintain then your baby will be tested every 90 days from then on OR until you see signs that the cortisol is dropping too much or rising again.
    "May you know that absence is full of tender presence and that nothing is ever lost or forgotten." John O'Donahue, "Eternal Echoes"

    Death is not a changing of worlds as most imagine, as much as the walls of this world infinitely expanding.

  7. #7

    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    Hello everyone, I am very sad to announce that Lucy has died. I am not sure what the cause actually was but she just didn’t make it. She has been on Vetoryl 40-50 mg bid since December and not sure what really happened. I just wanted you to know. She was 7 years and 3 days when se passed.

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    mytil's Avatar
    mytil is offline Administrator and always In Loving Memory
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    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    I am so very sorry to read this - our hearts are with you!
    We have added your dear Lucy to our Remembrance list in our In Loving Memory section.
    Sending healing hugs
    Terry

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    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    I'm so sorry for your loss. Not knowing leaves us with so many questions...Lena's been gone nine years and Gable is coming up on three, and I still wonder what happened.

    Many hugs to you.
    Joan
    Joan, mom to my Angel Lena, Angel Gable, Angel Phoenix, Angel Doree, Cooper, Sibble, and now Raina.

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    Default Re: Lucy - 6 yo newfoundland with Cushingns and BAD calcinosis cutis

    Oh, I am so very sorry to read this news, too. Thank you so much, though, for returning and letting us know. As Terry says, it’s our honor to add Lucy to our special Remembrance thread. And if you’d ever wish to have us add a photo link to her Remembrance line, you can send a picture to us at k9cushings@gnail.com. We’ll take care of the rest.

    Please know we’ll be here if you’d ever like to tell us more about your sweet Lucy and your lives together. And we send our healing wishes to you, today and always.

    In loving memory of your dear girl.
    Marianne

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