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Thread: How to know when you're having a flare

  1. #71
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    Am I posting this in the right section ?? probably needs to be moved ??

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    Natalie, sorry to hear that. I am on 2000 mg of cellcept and 8 mg of prednisone..plus cyclosporine ( immunosuppresant drug). It sounds like your wegeners is active and you might ( my two cents opinion) need RtX ( the IV one Sangye took) to control the Wegeners disease.
    Yes, I remember Sangye saying that if the wound is Wegeners (vasculits) then it takes awhile to heal.

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    I agree with Elephant-- sounds like active Wegs. Only a biopsy of the wound can tell if the wound is a vasculitic lesion or if it's "just" infection. If it's related to Wegs, then proper Wegs treatment will help it to heal. If it's infection, the pred and Cellcept will complicate the healing by making it more susceptible to infection and cause slower healing in general (pred side effect).

    You really need a rheumy to oversee your care. There's just no way a renal doc can handle the wide range of issues.

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    thanks for the reply elephant and Sangye I will be all over this when I see doc again which could be today waiting on a phone call for biopsy .
    I do now think Its wags because I have been on very strong High doses of antibiotics for 22 days now and hasnt made much of a difference.
    sangye how did this IV treatment affect your everyday living ?? not that I will have to take it but I will mention it to doc .. dose it have bad side effects ?? I think I seen a thread on this drug on here , will have a read : ..

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    Default Brings back memories

    Ahh Natalie,
    I remember laying in a hospital bed 23 days hooked up to IV antibiotics because the drs didn't know what was wrong. All the while, necrosis was affecting my right leg and after 3 debridments, all different kinds of antibiotics, swelling up like a balloon and begging to be sent to a different hospital. 3 days after going to a different hospital, I was diagnosed. I can't remember exactly the dose of pred at the beginning. I think maybe 80 mg and 150 ctx. Healing was slow. I was fortunate to not pick up any infections and I had 3 plastic surgery's within 3 months. I was back to work in 8 months. I have been very blessed . I wish the best for you.

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    Quote Originally Posted by Terri View Post
    Ahh Natalie,
    I remember laying in a hospital bed 23 days hooked up to IV antibiotics because the drs didn't know what was wrong. All the while, necrosis was affecting my right leg and after 3 debridments, all different kinds of antibiotics, swelling up like a balloon and begging to be sent to a different hospital. 3 days after going to a different hospital, I was diagnosed. I can't remember exactly the dose of pred at the beginning. I think maybe 80 mg and 150 ctx. Healing was slow. I was fortunate to not pick up any infections and I had 3 plastic surgery's within 3 months. I was back to work in 8 months. I have been very blessed . I wish the best for you.
    gee wiz Terri must us weggies always have to take the long way around . Did this happen before you were first Diagnosed? or after and found that the necrosis was wegs related ?? . thank you for the well wishes

  7. #77
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    Default Before and after

    Most of it happened before being diagnosed. The plastic surgery's came after.
    It was a lung biopsy that determined W.G. I had several large granulomas on my right lung.
    And you are right, seems us weggies DO take the long way around. LOL

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    hi summer, i'm still waiting for a conformation of wegeners, i was wondering how did you get a diagnoses owegs in your head? was it because you had headaches.

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    ok well looks like my Boob issuse isnt related to wegs .. it is healing nicely and docs have taken me off Antibiotics ..It was a fistula that was preventing the wound from healing , so now that that is sorted it is healing up with no further brake downs of the skin around the wound . .. I have another blood test in about 2 weeks and see how they look .. Thanks all for your help in this issuse . it did help being able to hear different points of view .

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    So glad it's healing well, Natalie. Good news.

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