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Thread: Wayne has crossed The Bridge / Wayne-Newly diagnosed 10-year-old pit mix

  1. #1
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    Unhappy Wayne has crossed The Bridge / Wayne-Newly diagnosed 10-year-old pit mix

    By way of introduction, Hi, I'm pibblesandbits, mom to 3 canine kids and 1 human kid. My sweetest dog Wayne (~10yo, almost 11) has finally gotten a diagnosis of Cushing's Disease, pituitary-dependent. After a bunch of mismanagement by the old vet who didn't read his basic lab results until I had hounded them by phone for 2 months, at which point she said, "Wow, that is really abnormal, we should rerun the labs since it's been so long", we switched providers. She kept saying all his symptoms were because of arthritis. Sigh. So, we are in the care of a new vet now, and he has received his diagnosis. He started his treatment with Trilostane 120mg on Friday, but on Saturday night he had frank blood in his urine and developed tremors. We are so terrified, and the vet doesn't open until Monday, but their emergency line did say to discontinue the medication until we can speak with his primary vet.

    I love these dogs so much. They got me through a very tough time when I was taking care of my own sick mom, and I feel I owe him more than he's getting. He is suffering and has been for months because we were unable to get answers for such a long time. He has been symptomatic since the late summer at least. He has lost so much muscle mass that his chest kind of hangs in front of him, and his hind quarters are just saggy. He struggles to get up and down the few stairs to our apartment. His hunger has been off the charts, to the point where he tore the door off the dog food bin while we were out. His thirst is also overwhelming, and we tracked that he would drink 8+ liters/day if left to his own devices. He's even eating snow because of how desperately thirsty he feels. As a result of the Cushing's and the water intake, he has been having so many accidents inside, and I know he feels bad about them, so we are doing all we can to bring him out every hour when we're home. He's also had a couple accidents while lying on the ground and he didn't even get up as he peed all over himself! It made me worry that maybe his mind is going too?

    I had such high hopes that with a diagnosis and treatment, he would start to feel better, but the peeing blood and shaking are terrifying and really make me feel like he's dying. And as much as I am freaking out about losing him (I cried so much last night watching him shake), I am also really worried about his sister, who has never been apart from him. I swear she's going to have a nervous breakdown without him. I don't even know what the point of this post is -- I guess I just want to thank everyone for all the information I've gained from reading here -- and also I would love to hear if anyone else tried alternative medications to trilostane, like anipryl, which I read about as another option.

    Thanks for reading. I know you all understand what I'm going through. This gentle giant of a dog is the absolute sweetest dog I have ever met, and this is breaking my heart. If the treatment doesn't work, is this the end? I wish I knew the future because this is so heartbreaking for us.

  2. #2
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    Default Re: Checking in for December 2017

    I am a new member who has been reading along for a few months now but just registered. I made a stand-alone post about my dear dog Wayne, who is newly diagnosed. The treatment has been a disaster so far, and we are so lost and terrified about what to do next. I'm also freaking out a bit because I have been the one giving him his trilostane, and I am pregnant, and the vet never told me that you're not supposed to even touch the stuff if you're pregnant. It has been a terrible couple days. If anyone cares to read my post, I would welcome your feedback on alternative medications like anipryl. I want Wayne to feel better but it seems like all the medications are pretty terrifying in their own right. Wayne has been urinating a fair amount of blood and has developed tremors on the new medicine, and I just want to know if there's any hope of this improving or if we need to consider different medications. Thanks for reading.

  3. #3
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    Default Re: Newly diagnosed 10-year-old pit mix, horrible reactions to Vetoryl/Trilostane

    Welcome to you and Wayne ó I am SOOOO glad youíve found us! We surely understand your worry, and weíll do our very best to support you both. Upon saying that, I regret that I donít have much time to post a comprehensive note right now, but Iíll do my best to return by tomorrow and write more. In the meantime, hereís a couple of quick thoughts. It seems very possible to me that Wayne may have developed an acute urinary tract infection. Cushpups are very vulnerable to UTIs, and that could definitely account for the blood in his urine. So your vet may want to check his urine tomorrow and even just go ahead and start him on a broad-spectrum antibiotic based on the assumption of a UTI, while awaiting a culture.

    In the meantime, I agree that itís wise to discontinue the trilostane until you have the chance to consult with your vet tomorrow. Can you tell us how much Wayne weighs? Unless Wayne is a really big boy, 120 mg. may actually be a higher dose than he can comfortably tolerate. Initial dosing recommendations have really shifted downwards during the last ten years, and the most widely accepted recommendation now is to begin at a dose that does not exceed 1mg. per pound. So if Wayne weighs less than 120 pounds, he might benefit from a lower dose to begin with. Hereís a link that helps explain the reasoning for this.

    http://www.k9cushings.com/forum/show...=1251#post1251

    I noticed in another reply that you are concerned that you have been handling the capsules even though you are pregnant. Itís very true that your vet should have cautioned you about this, but I cannot imagine that you have really exposed yourself to a genuine risk after only a couple of days. From now on, though, it would undoubtedly be best if you wore some plastic/rubber/latex gloves while handling the capsules. And for sure, do not open the capsules and expose yourself to the powder either by handling or inhaling it. To be on the truly safe side, you may want to contact Dechra, the maker of Vetoryl, directly in order to see whether they have any other precautions that they would suggest to you in terms of future handling.

    OK, Iím afraid Iíve got to run for now. But please donít give up hope for your sweet boy! Uncontrolled Cushingís can definitely cause severe and distressing symptoms, but lowering the cortisol can result in enormous improvement. So letís first see what the vet has to say tomorrow, and then we can go from there.

    Once again, welcome to you both!
    Marianne

  4. #4
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    Default Re: Newly diagnosed 10-year-old pit mix, horrible reactions to Vetoryl/Trilostane

    Hi and welcome to you and Wayne!

    I am on my way out the door right now but did want to ask you how much Wayne weighs. The starting dose for Vetoryl (Trilostane) is 1mg per lb so a 120mg dose would be right for a dog weighing 120 lbs....but that would a rather large Pit, even mixed unless with a Mastiff, Dane, etc. So if you could tell us his weight that would be wonderful! Meanwhile do NOT restart the Trilo until we can talk a bit.

    Also if you would get copies of all the testing done to diagnose Wayne and post those results here in his thread that would help us give you more meaning feedback. On the wellness screen that shows things like BUN, CHOL, T4, etc we only need to see those values that are too high or too low along with the normal ranges for each and the little letters like mnol/l, ug/dl, etc for each value you post.

    One more question - is there any chance he has an UTI? Does his urine have a strong smell (yes, we squat and sniff! ) and/or is the color darker than normal (you can use a white tissue/paper towel to see if he goes outside - just blot a bit up without getting mud if possible)? Those two are hallmark signs of an UTI.

    I am sure others will be along soon to chat with you. For now keep and eye on him and make sure he has constant access to water - cush babies don't pee a lot because they drink a lot. They are going to pee regardless and can quickly dehydrate if water is not always available.

    I'm glad you found us and look forward to seeing those test results soon...and any other detail you can give us. We LOVE details!

    Hugs,
    Leslie
    "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.

  5. #5
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    Default Re: Newly diagnosed 10-year-old pit mix, horrible reactions to Vetoryl/Trilostane

    You will see that I have moved your reply from our "Checking in" thread to your original thread about Wayne. This way, all his treatment information will be in one place, and that will help folks give you better feedback.

    Since Wayne is passing blood in his urine it is very likely that he has an UTI which the vet can check via an urine sample.

    With respect to Anipryl, unfortunately it's efficacy is not great. It really is only effective in dogs having a pituitary tumor in the pars intermedia lobe. Only a very small percentage of dogs have a tumor in the pars intermedia and efficacy in those dogs is questionable, depending on the progression of the disease. Even the developer of the drug, Dr. David Bruyette, who was also a short time member here, limits its use to dogs with very mild symptoms or pet owners who can't afford the cost of the ACTH stimulation tests that must be done to monitor Lysodren and Vetoryl treatment.

    We do have another thread on the forum where different medications are discussed, here's a link to that thread: Cabergoline, Retinoic Acid, and other novel pituitary Cushing's treatments One particular link in that thread is to an article published by noted endocrinologist, Dr. David Bruyette: Part 3: Current & Investigative Options for Therapy

    However, those medications have not been widely researched compared to the conventional drugs of Trilostane (Vetroyl) and Mitotane (Lysodren). Vetoryl/Trilostane and Lysodren/Mitotane are strong drugs and both have some pretty scary side effects, however, adverse effects are minimized when the proper treatment protocols are followed.

    Improvement in symptoms such as the excessive drinking/urinating and appetite are generally seen within two weeks of treatment. Regaining muscle mass takes much longer, it's usually months before improvement is noticed.

    How is Wayne doing today?

  6. #6
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    Default Re: Newly diagnosed 10-year-old pit mix, horrible reactions to Vetoryl/Trilostane

    I have taken the liberty of adding Wayne's name to his thread so it will be easier to pick out when you want to chat with us.
    "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
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    Default Re: Newly diagnosed 10-year-old pit mix, horrible reactions to Vetoryl/Trilostane

    Thank you so much, labblab/Marianne! I apologize for the delay in responding -- I am new to this site so I was waiting to be verified and had trouble navigating back to my post. To answer your question, Wayne weighs about 68 lbs. Thank you for that link -- I will discuss it with the vet!

    You were right on the money with your comment. Wayne did indeed have a UTI, which we finished treatment for yesterday. Thankfully the blood in the urine has stopped, as have some of the signs of urge incontinence. I feel terrible that he was suffering with that for who knows how long and that it got to the point it did before he was treated.

    We also did discontinue the trilostane for a couple days until we could speak with the doctor who gave us the exact same advice you did. You really know your stuff! However he's back on it now, which means he has gotten a total of 12 doses. We are really hoping we start to see some alleviation of symptoms soon.

    As of now, it seems like the thirst has improved but the hunger has not. Did you experience that with your own dog? Did their hunger ever return to normal? One thing that concerns us is that his food aggression, which he never exhibited before the onset of Cushing's, has not improved either and may even be getting worse. Yesterday he bit several holes in our daughter's high chair (she was not in it at the time) trying to pull it over to get at a couple morsels of cereal that were left on her tray. Obviously that is not a tenable pattern. We have a follow-up appointment and ACTH test with the vet tomorrow morning and will certainly ask them too, but I am interested in any anecdotes you and others may be able to share as well.

    Finally, thank you for the tip about contacting the drug maker -- I will try to do that today!

    Quote Originally Posted by labblab View Post
    Welcome to you and Wayne — I am SOOOO glad you’ve found us! We surely understand your worry, and we’ll do our very best to support you both. Upon saying that, I regret that I don’t have much time to post a comprehensive note right now, but I’ll do my best to return by tomorrow and write more. In the meantime, here’s a couple of quick thoughts. It seems very possible to me that Wayne may have developed an acute urinary tract infection. Cushpups are very vulnerable to UTIs, and that could definitely account for the blood in his urine. So your vet may want to check his urine tomorrow and even just go ahead and start him on a broad-spectrum antibiotic based on the assumption of a UTI, while awaiting a culture.

    In the meantime, I agree that it’s wise to discontinue the trilostane until you have the chance to consult with your vet tomorrow. Can you tell us how much Wayne weighs? Unless Wayne is a really big boy, 120 mg. may actually be a higher dose than he can comfortably tolerate. Initial dosing recommendations have really shifted downwards during the last ten years, and the most widely accepted recommendation now is to begin at a dose that does not exceed 1mg. per pound. So if Wayne weighs less than 120 pounds, he might benefit from a lower dose to begin with. Here’s a link that helps explain the reasoning for this.

    http://www.k9cushings.com/forum/show...=1251#post1251

    I noticed in another reply that you are concerned that you have been handling the capsules even though you are pregnant. It’s very true that your vet should have cautioned you about this, but I cannot imagine that you have really exposed yourself to a genuine risk after only a couple of days. From now on, though, it would undoubtedly be best if you wore some plastic/rubber/latex gloves while handling the capsules. And for sure, do not open the capsules and expose yourself to the powder either by handling or inhaling it. To be on the truly safe side, you may want to contact Dechra, the maker of Vetoryl, directly in order to see whether they have any other precautions that they would suggest to you in terms of future handling.

    OK, I’m afraid I’ve got to run for now. But please don’t give up hope for your sweet boy! Uncontrolled Cushing’s can definitely cause severe and distressing symptoms, but lowering the cortisol can result in enormous improvement. So let’s first see what the vet has to say tomorrow, and then we can go from there.

    Once again, welcome to you both!
    Marianne

  8. #8
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    Default Re: Newly diagnosed 10-year-old pit mix, horrible reactions to Vetoryl/Trilostane

    Dear Harley PoMMom, thanks so much for your reply! You were right about the UTI, which we have now treated.

    Your input about the anipryl is extremely helpful and I really appreciate it. I now feel a lot better about not having tried that first. I was just in a panic at seeing him so sick after just 2 doses of trilostane, but I realize now that it was probably the acute UTI that was causing the tremors and blood in urine, so we are sticking with the vet-recommended trilostane for now. I just hope it starts to work soon. He has been on it almost 2 whole weeks, and at a fairly high dose (120 mg for a ~68 lb dog), and to be honest, we are not seeing a ton of improvement. It would be surprising if the doctor were willing to lower his dose in light of this lack of improvement. As I posted above in response to another member, Wayne is at least recovered from the UTI, but we still have concerns about his excessive hunger. It is a little frightening to see how desperate he is for food. He never showed even a hint of food aggression in his life until the last few months, and as a household with 3 dogs, 2 adults, 1 child, and another child on the way, I am desperate to get him past this food aggression in particular. He is such a sweetheart, by far the sweetest of our dogs, and it is scary to think that something is going wrong with his brain and changing his personality. I will certainly try to keep you guys posted. Thanks so much for asking!

    Finally, I am reading through all the links you shared -- very helpful too! Thanks again for writing back.

    Quote Originally Posted by Harley PoMMom View Post
    You will see that I have moved your reply from our "Checking in" thread to your original thread about Wayne. This way, all his treatment information will be in one place, and that will help folks give you better feedback.

    Since Wayne is passing blood in his urine it is very likely that he has an UTI which the vet can check via an urine sample.

    With respect to Anipryl, unfortunately it's efficacy is not great. It really is only effective in dogs having a pituitary tumor in the pars intermedia lobe. Only a very small percentage of dogs have a tumor in the pars intermedia and efficacy in those dogs is questionable, depending on the progression of the disease. Even the developer of the drug, Dr. David Bruyette, who was also a short time member here, limits its use to dogs with very mild symptoms or pet owners who can't afford the cost of the ACTH stimulation tests that must be done to monitor Lysodren and Vetoryl treatment.

    We do have another thread on the forum where different medications are discussed, here's a link to that thread: Cabergoline, Retinoic Acid, and other novel pituitary Cushing's treatments One particular link in that thread is to an article published by noted endocrinologist, Dr. David Bruyette: Part 3: Current & Investigative Options for Therapy

    However, those medications have not been widely researched compared to the conventional drugs of Trilostane (Vetroyl) and Mitotane (Lysodren). Vetoryl/Trilostane and Lysodren/Mitotane are strong drugs and both have some pretty scary side effects, however, adverse effects are minimized when the proper treatment protocols are followed.

    Improvement in symptoms such as the excessive drinking/urinating and appetite are generally seen within two weeks of treatment. Regaining muscle mass takes much longer, it's usually months before improvement is noticed.

    How is Wayne doing today?

  9. #9
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    Default Re: Newly diagnosed 10-year-old pit mix, horrible reactions to Vetoryl/Trilostane

    Dear Squirt's Mom/Leslie, thank you so much for your reply! Wayne weighs about 68 lbs. You are right that his dose does seem awfully high -- I am going to bring this up with the vet when we see her tomorrow morning, but I have a feeling that she will not want to lower the dose quite yet considering the lack of improvement in symptoms.

    I also appreciate the reminder to get his lab results for my own files. I tend to do that for my own care but I've been such a mess about my poor dog that I simply forgot to ask for copies last time. I will do that tomorrow at the followup appointment! I am also very happy to share the details with a detail-oriented bunch. I will post them here if that's okay. I do know that his last vet, who wasn't really considering Cushing's, did run quite a few tests but then never told us the results (and it took months for her to release them to the new vet). I believe the new vet does finally have those results for thyroid and kidney function, so I will ask to see those too.

    By the way, your advice about access to water was something I had read elsewhere on this site, and I so appreciate you sharing it again because it cannot be said enough. If I were just wading in and had to pick one piece of advice for newbies, that would be it. In fact, that was something I felt I observed early on in Wayne - that his urination seemed in a way to be uncoupled from his water intake. He peed copious amounts regardless of how much water he had. On days when I was limiting his water (which I never do anymore), he still peed rivers, and that made me so suspicious for Cushing's. If only I'd been wrong Anyway, thanks for welcoming me, and I look forward to sharing more with you guys as we learn more.


    Quote Originally Posted by Squirt's Mom View Post
    Hi and welcome to you and Wayne!

    I am on my way out the door right now but did want to ask you how much Wayne weighs. The starting dose for Vetoryl (Trilostane) is 1mg per lb so a 120mg dose would be right for a dog weighing 120 lbs....but that would a rather large Pit, even mixed unless with a Mastiff, Dane, etc. So if you could tell us his weight that would be wonderful! Meanwhile do NOT restart the Trilo until we can talk a bit.

    Also if you would get copies of all the testing done to diagnose Wayne and post those results here in his thread that would help us give you more meaning feedback. On the wellness screen that shows things like BUN, CHOL, T4, etc we only need to see those values that are too high or too low along with the normal ranges for each and the little letters like mnol/l, ug/dl, etc for each value you post.

    One more question - is there any chance he has an UTI? Does his urine have a strong smell (yes, we squat and sniff! ) and/or is the color darker than normal (you can use a white tissue/paper towel to see if he goes outside - just blot a bit up without getting mud if possible)? Those two are hallmark signs of an UTI.

    I am sure others will be along soon to chat with you. For now keep and eye on him and make sure he has constant access to water - cush babies don't pee a lot because they drink a lot. They are going to pee regardless and can quickly dehydrate if water is not always available.

    I'm glad you found us and look forward to seeing those test results soon...and any other detail you can give us. We LOVE details!

    Hugs,
    Leslie

  10. #10
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    Default Re: Wayne-Newly diagnosed 10-year-old pit mix, horrible reactions to Vetoryl/Trilosta

    That appetite in a cushdog does seem insatiable and should lessen. In the meantime, between meals some of our members have given their dog some carrots or frozen green beans to help with that hunger.

    Good luck with the ACTH stimulation test, and 2 reminders regarding that test: the Trilostane has to be given with a meal even on the day of the test; and the ACTH stim test has to be performed 4-6 hours after the Trilostane was given.

    Lori

    PS ~ I posted a link to your thread on your visitor message board located in your profile page.

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