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Thread: Longevity with GPA

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    Cool Longevity with GPA

    I am new to the forum and I read the post from the Australian Lay who had had GPA for 29 years! It prompts me to ask what is our likely longevity with this disease? My mother lived to 103. I am now 75. Can I hope to match her longevity or will this disease or its drugs get me earlier? I was diagnosed a year ago but had symptoms for about two years before that.

    I appreciate any thoughts on this issue!

    Patricia

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    Hi Patricia,

    I'm six years in at age 70. Thanks to some great docs and effective meds, I do everything I need to do and most of what I want to do. I lead my pre-wegs lifestyle amended to eating cleaner and adjusting my exercise routine to account for a hip that gets cranky.

    i think if you lead a lifestyle of healthy eating and age appropriate exercise, you'll do fine.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Hi Patricia. Longevity of this disease is impossible to predict, there are too many variables. I have severe kidney damage and slight lung damage. I was diagnosed in 1995 aged 17, although my symptoms started the year before. I've now reached the stage where I need a kidney transplant.
    it is unlikely GPA/Wegener's will be listed on my death certificate. It is likely that I will die from heart attack or stroke due to renal failure (caused by Wegener's).

    You could say nobody dies from Wegener's as they die from the failure of an organ (s) that Wegener's has "attacked".

    You could, of course, die from something totally unrelated to Wegener's. It would be interesting to know how many Wegener's patients die from a result of Wegener's and/or it's treatment VS how many die from other unrelated causes. I predict the vast majority would be due to Wegener's, but death certificates would list the organ failure. Maybe if deaths were recorded more accurately, more time, money and effort would be spent on less toxic treatments and ideally a cure.

    I hope you surpass your mother's great age. The main risks are lung and kidney damage as far as life threatening issues go. Make sure you keep on top of these with blood tests, etc. Prompt treatment is important as kidneys and lungs don't heal well.
    Diagnosed April 1995

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    Pete,
    Thank you for your input. I am doing my best to try to stay healthy and stay on my meds! I can't help wondering, though, what the very long term effects of prednisone and methotrexate are.

    Patricia

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    Gilders, Thank you for your reply. I saw it first on my email and answered you there.

    Patricia

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    At higher doses, prednisone carries the risk of osteopenia or osteoporosis. Also, cataracts may arise. I think liver problems may be associated with methotrexate. I take two caltrate 600+D daily for bone health. I also have a bone density test done every other year. I've been off methotrexate for almost three years. I took folic acid to minimize hair loss. I also have a metabolic panel done every other month to be sure kidneys and liver are ok.

    The thing about side effects is that you probably won't any or they will be mild. The list of side effects with a med and the disclaimers accompanying it are written by lawyers to cover big pharma's hiney. Talk to your doctor about your concerns and possible remedies.

    A key issue to keep in mind is how you're feeling. My docs ask me that, and if I'm feeling good, they downplay anomalies in test results. As an example, my creatinine usually is a little above normal. It's stable and I feel fine, so my docs don't get concerned.

    Hope this helps..
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Sorry to be super vague here, but I have seen (and cannot currently locate) a bar chart or graph with causes of death at one year and five years (I think) for GPA patients. The big takeaway for me was that the main danger lies with infections, for patients who are a couple years out from diagnosis.

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    Patricia, I also take methotrexate and have pretty much gotten used to the side effects, I may feel a bit nauseous or just yucky if I'm extra low on sleep. Knowing that it can negatively affect the liver, I'm tested for that every three months, and after four or five years on it, there have been no issues. I do take folic acid with it. My neighbor took it for 12 years for RA and something finally showed up in his liver testing, so he was taken off it and put on something else. That would happen in our case, too. It is recommended that alcohol not be consumed, or on a very limited basis.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    As for prednisone, it does decrease bone density and cause osteoporosis. So it is recommended to get off the high doses, 20mg or over, as soon as possible, and to try to eventually taper down to below 10mg or go off it altogether.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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