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Thread: Heavy Heart - Buddy not well (Buddy has passed)

  1. #1
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    Default Heavy Heart - Buddy not well (Buddy has passed)

    Hi there

    I am new to this forum and only found it when searching for calcinosis treatment and there was this site. I must admit it is hard to read some of the posts as I hear myself in the stories of others. Even writing now I feel quite emotional. Denial is a more comfortable place to be at this time. I'm still at the stage of wanting a miracle to happen where I wake up one morning and my boy will be back to his old self again.

    My beloved Boxer, Buddy, aged 10.5, (his mum lived to 13 years) has always had excellent health until a year ago when he was diagnosed with hypothyroidism. Treatment has been successful though I still felt his fluid consumption was excessive. This began to increase – 3 litres plus a day - so back to the vet and he has now been diagnosed with probable adrenal-based hyperadrenocorticism. He had had the Urine Cortisol/Creatinine Ratio Test, Low Dose Dexamethasone Suppression Test and High Dose Dexamethasone Suppression Test plus ACTH Stimulation Test. My vet did do an ultrasound but said his expertise and with the limitations of his equipment he was unable to come up with anything conclusive, that’s why I say ‘probable’. There are no specialists I where I live, however, I do have faith in my vet.

    So Buddy’s fluid consumption is of concern – we have gone from a water bowl to a water bucket - and he does have the classic muscle wastage around his back end, pot belly, a couple of sores that won’t heal but otherwise he’s quite a happy chappy. He has no hair loss, in fact he stopped moulting pre hypothyroidism, so doesn’t grow a coat at all. His coat remains healthy and quite thick. He was shaved for the ultrasound so is going to have a large bald patch from now on. Nor does Buddy pant, he has never done this so these two classic symptoms are absent. He still enjoys trotting around our paddocks and loves going for car rides though his energy levels are markedly lower than they used to be.

    I have made a definite decision not to go with surgery and haven’t started Buddy on drugs. I feel reluctant to do so after all the research I’ve been doing. Trilostane is prohibitively expensive in New Zealand so that only leaves mitotane and the side effects worry me. I’m in a space where I want quality of life rather than risks I might regret. But lots of members on this site are saying the same thing so I won’t repeat what is common to these situations.

    What I want to know is how you get past this apprehension?

    Thank you for listening.
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  2. #2
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    Default Re: Heavy heart

    Hi Coop and Buddy,

    Welcome from another Kiwi. As you can see from my location I live in Papamoa. Our handsome, now passed, Hungarian Vizsla Sabre was diagnosed with cushings and treated with Lysodren for two years.

    At the time I did not look fully into treating with Trilostane but it was my understanding at that point in time (2008) that VSG (in Auckland) could import it in and I made the presumption that you had to be in their care ... and my understanding was that they were incredibily expensive. All presumptions on my behalf, but I now know of an owner who has taken their Vizsla to this specialist clinic and has spent a small fortune ... make that large fortune ... with IMHA issues.

    So given the above we decided to go with Lysodren. From recollection we could get 20 tablets (500mg tablets) for just under $120. The best thing I could have done was find this site and research ... research and research. This allowed me to monitor Sabre more diligently and learn not to be fearful of his treatment. Treating Sabre with Lysodren actually gave him "Quality of Life" . He had massive hair loss and lots of calcinosis cutis which was only getting worse. With treatment his hair regrew and his calcinosis cutis resolved to the point of "being there" but not being an issue.

    Do you have the results from the tests?

    Did your vet ascertain that the skin infections were calcinosis cutis? In the initial stages three vets in the practice looked at Sabre and had no idea what his skin issues were. It was with a biopsy that we were abe to find out what they were. All three vets had never see a case of calcinosis cutis in their years in the industry ... two of which had also spent time in the UK.

    If you have any queries please ask away.

    Angela and Flynn (our rather needy Vizsla - in remission IMHA and SRMA)

  3. #3
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    Default Re: Heavy heart

    Hi and welcome. I'm pretty much a newbie myself.

    I can say, I went through anger and denial all probably right up till today when after the ultrasound, the diagnosis was confirmed and a plan that I was comfortable with was come up with.

    I think that is the key, not exactly what test you get, or what medicine you decide to go with or not go with specifically. I think it is having a plan, knowing what you are going to do and feeling that whatever that is, it is what will be best for Buddy. Once you feel that, then it is easier to come to terms with what is and what will be and what everything means.

    I hope that makes sense.

    I don't know if the feeling will last. I hope so. I expect anxiety when we start meds, whenever that is for us and I expect I'll be right here through it all asking for advice, help and understanding. So maybe you'll have some up and down times still, I'm pretty sure you will, nothing seems to be easy with this thing, but at least there is some place with others who have all walked this same path.

    HUGS to you and Buddy
    Sharlene and the late great diva - Molly muffin (always missed and never forgotten)

  4. #4
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    Default Re: Heavy heart

    Sorry, posted twice.
    Last edited by Coop; 07-14-2012 at 04:50 AM. Reason: Posted same message twice.

  5. #5
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    Default Re: Heavy heart

    Thank you Angela and Molly for you words of reassurance. Angela, I am sad to hear your dear friend Sabre is no longer with you. I love the Hungarian Vizsla as a breed. Very handsome. I am from Dunedin.
    I guess Molly, your words made an impact on me though I am still waiting for a direction (plan) to revel itself that feels like the right one for Buddy. I suppose I keep thinking that maybe it's not Cushing's but if it isn't there is something radically wrong or he wouldn't have all the symptoms he has. See, still in denial!!! I think I've done so much research - the good and the not so good - that I'm fearful of taking the drug option.
    What I would like to know Angela is when you say Sabre's quality of life improved once on drugs what specifically did you observe apart from the coat regrowth and improvement in his calcinosis cutis? Does the muscle wasting improve, the pot belly, energy levels? Buddy's drinking worries me the most and I would assume that would be a significant improvement. If I'm going to come to a decision then I have to weigh up how he is now with how he would potentially be on drugs. Yes, that makes sense to me. Writing my thoughts down helps. But on the flip side I would like to know what could be the down side of Lysodren.
    Angela, I don't have the results of his tests, only that the vet told me they were significant enough to indicate 'probable' Cushing's. I could ask for them if it was going to be helpful for comment. These are the costs I was quoted.
    Cost of drugs: Mitotane, for the first month around $1100.00 then $230 per month. Trilostane, same cost ongoing $800 per month.
    Kisses from Buddy

  6. #6
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    Default Re: Heavy heart

    The test results would undoubtedly be useful in order for some of our senior members to help you be more comfortable in the diagnosis, first and foremost. While I understand (and envy, a bit!) that you trust your vet, sometimes even the most well-meaning, ambitious of vets can get out of their depth with this disease. In this forum, there are people with far more knowledge and experience in this specialty than in probably all four of the vets I've seen, combined. So...get and post the test results - maybe that will move us to be able to help you toward the elusive plan!

    Past that, though, I notice that you say the excess drinking is your primary concern. Is he having accidents in the house? Because if he isn't, then the excess consumption is probably more a problem for you than for him, would be my guess. If he is, as you say, a 'happy chappy,' then you may not need to move forward with any medication at this time. Usually, the symptoms that move owners to investigate this mess is excess water consumption...that leads to household accidents...or excessive hunger (that is, I can tell you as the voice of painful experience, a horrible, horrible thing to witness and definitely diminishes the pup's quality of life). If there are no accidents, and he seems otherwise happy, that sounds like a pretty decent quality of life to me.

    Now, that said, as a fellow Boxer owner/lover, I am also guessing that when you mention he's got a 'markedly lower energy level'...well, that in itself is a special problem for our boys, isn't it? Because they usually have such boundless energy and personality, it's hard to see them laying about. We are fairly certain that our boy has Atypical Cushing's, so I have had him on flax/melatonin for a little over two months now, and that has worked miracles on his ravenous appetite, which was always my primary concern. However, in recent weeks, he has been so withdrawn and lethargic that I felt compelled to seek out further medical options for him, because when I don't see that Boxer 'spark,' I just can't help but feel he's unhappy. That's going to be a decision that you will have to make...trying to find a balance between healthy, and actual happiness.

    Right now, it sounds like you're doing a fine job. Based on what you've told us so far, if I were in your shoes, I don't think I'd be in a hurry to medicate him. But, in the same breath, I would encourage you not to be shy of the medications, because there are a lot of success stories with Lysodren (as well as Trilostane). I felt the exact same fear as you did, but in the past few months I've become fairly certain that once we are settled in our new home and are 100% sure of his diagnosis, we will end up medicating him, most likely with Lysodren as it is the drug appropriate to his case. I think the risk of giving him back his old self is worth it, and besides that...properly medicated and monitored, the risk is not all that great.

    All this, I suppose, is a long-winded way of saying that my heart goes out to you, but that you are no longer alone in this diagnosis. This forum is an absolutely invaluable resource and support system....you'll see.

    Big sloppy Boxer smooches from our house to yours,
    Jenn & Co
    Last edited by Somesie; 07-14-2012 at 06:52 AM.

  7. #7
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    Default Re: Heavy heart

    Hi

    I spent 11 years of my life in Dunedin (school and uni) and have a soft spot for the city.


    With regards to things I saw change ... before treatment Sabre was actually going downhill quite fast ... he got a sprung toe ... could barely walk, had a pot belly, muscle wasting (this was quite rapid), drunk a ton of water, always wanting food, huge weight gain (he was usually about 27kg and he went up to 34kg) was getting up every 2-3 hours every night along with a major case of pyoderma around his anus, his calcinosis cutis and hair loss. Without treatment we believe he would not have been around within a short time. He went from normal in Nov/Dec to this state by February. We saw everything turn around ... within 4 - 6 months. With water intake and food hunger taking the least time to remedy and the calcinosis cutis and hair loss the longest to remedy. He went from barely walking to being that usual 8/9 year old vizsla again ... we saw our handsome happy boy back again.

    Being absoutely honest, and not trying to scare you, the downside to Lysodren is the dogs cortisol levels can go too low (you can do this with trilostane as well). BUT ..... if you educate yourself cushings and Lysodren use, use this forum (they will totally hold your hand from a cyber perspective) to help you a long the way this and watch Buddy .... this risk can be absolutely minimised. Some dogs get a maintenance dose easily that maintains a stable post ACTH stim test result ... others (like our dear Sabre) take some time getting this dose at the level that it is right.

    So the downsides from treatment can be easily remedied with education ... arming yourself to be a great advocate for Buddy.

    With regards to costs ... it really depends on the dose. Generally Lysodren is administered at 25 to 50mg/kg. Initially there is a loading phase whereby this dose is given daily (generally split and given am and pm) until the post stim ACTH is between 1-5ug/dl ( 30-110 nmol/L). Once this is achieved the maintenance dose is generally what you loaded at and split over the week. ACTH stim tests are done once loaded, then 30 days after going on the maintenance dose, then every 3 months after that. If any changes to dose are made you should retest after 30 days. The cost of the drug quoted by your vet seems a lot on the high side ... how much does Buddy weigh? I used to pay $180 for the ACTH stim test from recollection.

    I would request the test results from your vet, post them online and place them in a file which you can update. Members can give you an idea of whether or not Buddy has cushings. Also help you interpret them as well.

    Angela and Flynn
    Last edited by Sabre's Mum; 07-14-2012 at 04:12 PM.

  8. #8
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    Default Re: Heavy heart

    Wow, you wonderful people are so generous with your time and support. Hopefully, one day I will be in the same position to offer the same to others. Sometimes I feel like my life is consumed with trying to understand this disease that I knew nothing about until more recently.

    Hi Jen, lovely to talk with another boxer enthusiast. We have had 4 boxers, Buddy is our third and we have a 6-year-old bitch, Yana. She is Buddy’s niece. We’re hooked on the breed. BTW, how do you add a photo next to your member name? I’d like to put Buddy there.

    Yes, Buddy has had accidents inside but now we are on a regime of letting him out through the night so no more since then. I have noticed that just lately he does seem hungrier, reminiscent of when he was pre meds for his hypothyroidism.

    The only way for me to be 100% sure of the diagnosis is to take a trip to Christchurch to the specialist there for an ultrasound since my own vet in Dunedin wasn’t successful with his equipment or expertise. Maybe I should be seriously considering this then I would know for sure what I am dealing with and the way forward will be clearer.

    Is it unusual for a Cushing’s dog not to have hair loss? As I said, Buddy has a thick coat but doesn’t moult at all nor does he grow hair back like when he was shaved for the ultrasound.

    I will contact the vet today and ask for his test results.

    Angela, thanks so much for taking the time to answer my questions – it is really helpful. If Buddy were to regain more energy and had your result –“we saw our handsome happy boy back again” - I would be delighted. Buddy isn’t miserable or sleeping all day but it’s a while since I’ve seen him run.

    Buddy’s normal weight was always around 30kgs but last time I weighed him he was up to 31 which isn’t too bad given his love of food lately.

    Thanks again.
    Buddy and Claire

  9. #9
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    Default Re: Heavy heart

    Hi! No, not all cush dogs have hair loss. The most common symptoms are excessive thirst and/or hunger and hind leg weakness. Hope this helps. Kim

  10. #10
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    Unhappy Re: Heavy heart

    Thanks Kim. Yes, that does help as I hadn't read anywhere that hair loss doesn't always happen in all dogs. Buddy has all the other symptoms you mention though I'm still waiting for his test results so will post these when they arrive.
    Claire
    Last edited by Coop; 07-15-2012 at 02:08 AM.

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