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Thread: How long does it take Wegener's to

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    Default How long does it take Wegener's to

    God evening all. I am very new at forums so if I mess up something i
    do apologize.

    A a little bit about me before my question.

    I go through peritoneal dialysis at home because I despised hemo. It sucked. I was diagnosed with Wegener's last year. Unfortunately too late to
    save my kidneys. And now I am in the process of appealing to the veterans board of appeals for full disability. I have a question for you all that might help my case.

    You our see I developed scleritis, uveitis, and Reiters syndrome about six years ago. The flare ups starts while I was in bootcamp for the Airforce.

    Now, my question. Is it possible for
    me to have had Wegners and nobody know for about five years. The scleritis and uveitis i
    had lasted a whopping 11 months. I looked baked for 11 months. And have never been healthy a day since i left the AF. What do you all think. Possible for me to have been sick for so very long. Mind you I did Take a lot of steroids to Help clear My eyes and Help with the reactive arthritis (Reiter's). Thanks. ✌️

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    Sergio,

    If you were on Steroids for that duration I'd say it's quite possible that it could have slowed progression to that point. As a vet myself I'm not super confident in the overall quality of medical care for rare conditions that can be received in the military or VA. There are some good doctors, but there are also some really bad ones in my experience. I'd say the likelihood of someone missing something is fair.
    ~ Bob

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    Thanks for your answer. I do believe what you say is right. If only others would comment to get a general idea of if I'm right in assuming that Wgeners took a while with me.

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    Hi Sergio,

    There are a number of folks on here who weren't diagnosed quickly - similar to your experience. I'm leery of the VA medical system. As Psyborg has said, there are good and bad doc's in that system. They're just not well-trained about rare autoimmune diseases.
    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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    Thanks Pete I'm glad I've four a place to bond with because wee this shit sucks bad at times. Hopefully my appeal goes smooth and I can fo be the father of the house. Not the extra sick man that everyone looks down too, and that can't do anything. Send good vibes my way people. ✌️

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    Hi Sergio,
    It could be argued that we all have Wegener's for many years undetected and it is only detected when it first flares up. Until my most recent relapse, my flares have started rapidly/aggressively. My most recent relapse started very slowly, but has been much more stubborn in achieving remission.
    Therefore, due to the experience of my slow progressing most recent relapse and the fact that you were taking steroids, I would say it is likely that you could have had active Wegener's for 5 years before diagnosis.

    I don't know if you will count the following as good or bad news, but you mentioned that Wegener's wasn't diagnosed early enough to save your kidneys. Although an early diagnosis of Wegener's may have saved your kidneys it would only be temporary. My kidneys were saved just over 20 years ago, but after each relapse of Wegener's they got damaged more. I am currently looking at transplant and dialysis options. I also hated hemodialysis(I had it just over 20 years ago) even though it saved my kidneys initially. I hope to get a transplant before I need dialysis, but realistically, I'll probably end up on dialysis first. I am leaning towards Peritoneal dialysis, like you. I think I'll do it through the night. Is that the method you use or do you do multiple exchanges through the day?
    Diagnosed April 1995

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    Sergio! I do believe it's possible. As my ENT said it's very rare and not many people are diagnosed with it right away. According to him you actually have to have enough symptoms before they can actually diagnosed you. One of the Dr's I went to suggest that this is what I had but they can't do blood work to diagnose. They actually took a tissue sample didn't show anything. They couldn't actually diagnose WG until I had more symptoms. It took another year before they actually all agreed because I had something else go wrong. So they assumed it was WG but couldn't say yes until they had more problems. I believe I had it for a while before I actually was told.

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    Wegs can smolder for a long time before breaking loose into something real serious that leads to correct diagnosis or death. My symptoms lasted at least three years or more and I saw a dozen doctors for various symptoms,nasal crusting and bleeding, joint pain, scleritis etc, before ending up in hospital with a serious condition. Some people might have Wegs smolder for a long time and not have such a big flare or eventually die with some diagnosed problem related to Wegs like kidney failure but miss the Wegs part altogether.
    Last edited by drz; 06-28-2016 at 11:00 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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