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

  1. #31
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    Doug and Jack, how right you are. While my son studies WG and other immune diseases quite in depth, this will probably be the only once they get to even talk about the disease let alone see a paient with WG, so its not surprising that by the time they start to practice all they learned about the disease hs been lost. \it is also so true about the ER docs. I actually blame the ER for my problems with my feet neuropathy. If I was not sent home with the "your feet numbness and burning sensation is due to steroids you take" and actually given more steroids or started on cyclo sooner I could probably walk normally today.
    Jolanta

  2. #32
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    Is your son studying medicine Jolanta?

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  4. #33
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    Yes, his is in his third year
    Jolanta

  5. #34
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    Great, then we will have a spec here

  6. #35
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    Hi summer, I think it is important to reduce more slowly at lower doses. 5m off 40 is only a small percentage but when you get down to 15mg it is a 1/3 of your dose and then it seems problems occur.

  7. #36
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    I was happily reducing my medication and was down to only 6 pred and nothing else, and guess what - no surprise except perhaps for my internest. He has now recommended a rheumatologist. What is the difference between to two of them. I asked my internest about milder preventative medication to just help with maintenance and he seemed reluctant to look at anything but proxytox which is a form of chemo. He claims it doesn't do me ANY harm at all? I have been put back at 50 mg proxytox and 30 mg pred. What a long trip back. I had an interesting progression of symptoms as I was withdrawing. First knee, shoulder and hand pain - nov. I did a bunch of physiotherapy and it seemed to resolve the problems within about a month except hand numbness? *I didn't know that was a problem?? In early dec after a further reduction in medication I had a most terrible day of dizziness, I could not walk, and had to be held up. Next day fine, except when I lay down at night, every night since then, I do my 15 sec spin. My hearing seems a little impaired too. after that increasing fatigue and finally the dreaded head/eyepain that was a precurser to me losing my vision a year ago, just in time for the New Year. I look at this and wonder how much is WG? How much is withdrawal. The upped meds immediately killed the pain, but the fatigue lingers. I am waiting for the change of doctors, so feel a little uneasy. Any ideas?

  8. #37
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    All I know is that procytox is Cytoxan and definitely harms the body and causes fatigue.

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  10. #38
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    I could be a combo cytoxan and WG flare your having. Sorry to hear that. Germaine do you have a Rheumatologist that specializes in wegeners disease?

  11. #39
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    Thanks for explaining what procytox is, Phil. I've never heard of that. I can't believe any doctor would be dumb and/or arrogant enough to say any drug doesn't do harm. Even aspirin does, for Pete's sake.

    Germaine, an internist is a general practitioner (aka family doctor, primary care physician, PCP). A rheumatologist specializes in autoimmune diseases. You definitely need a rheumy overseeing your care. Even if you had the most straight-forward case of Wegs, an internist is not skilled to oversee your care.

    If you're having the same symptoms that were Wegs before, they're likely Wegs now.

  12. #40
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    Thanks for the feedback. I knew I could count on you. In Canada an interist is definitely a specialist in internal medicine. We also have interns. I guess it is just a labelling thing. I have been asking and I guess the rheumatologist specializes in autoimmune diseases, but I am not really positive. Right now I am waiting to get an appointment. I am Ok, but am not real sure how things are going, so it is making me a little anxious.

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