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  1. Re: Can you flare if your medication seemed to be working?

    Thank you so much, Pete!
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    Re: Problems with breathing

    Hi there,

    Have you already been diagnosed? My original symptoms were chest pain and wheezing. I had a granuloma in my airway. Apparently it was in a strange spot, too - right below where the...
  3. Can you flare if your medication seemed to be working?

    Hi everyone,

    Really wishing everybody well.

    I'm on methotrexate (injectable) and have been off prednisone for a while - I feel very lucky. My last flare up was last Fall. I was on...
  4. Thank you, Andy. I can tell this is not...

    Thank you, Andy. I can tell this is not something I should leave alone. I booked an appointment today with an optometrist based on your advice. Unfortunately, I have to pay for that appointment so...
  5. Thank you Gab122 . I'll definitely ask that. I...

    Thank you Gab122 . I'll definitely ask that. I really appreciate the advice.
  6. Thanks for the reply! I spoke with my doctor...

    Thanks for the reply!

    I spoke with my doctor this afternoon. Very relieved. He wants to see me this month and I'm going back on prednisone.

    I asked about the ANCA and he said I don't need...
  7. Thanks for the reply, Susan! To be honest, I'm...

    Thanks for the reply, Susan! To be honest, I'm not too sure! I went to her because she was recommended to me by someone who says she's great. I just assumed she would be equipped for everything. ...
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    Definitely show your doctor, especially your...

    Definitely show your doctor, especially your rheumatologist, as they'll want to know if any new rashes or strange spots have come up. Have you tried any new products recently? Have any allergies?
    ...
  9. Prednisone required? And new "symptom"(?) - light sensitivity

    Hi everyone,

    My symptoms that lead to my diagnosis were bad breathing (turns out i had a granuloma in my bronchus tube, right where the trachea splits off), pain and swelling in my hands, pain in...
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    Thank you, that's very helpful!

    Thank you, that's very helpful!
  11. Replies
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    Your description is helpful, but I'm curious as...

    Your description is helpful, but I'm curious as to how you know whether it was the disease symptoms coming back or merely a withdrawal from the prednisone? I'm tapering prednisone now and each week...
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    Thanks for the response, Deb. Yes I'm very lucky...

    Thanks for the response, Deb. Yes I'm very lucky to have the parents I have. And two of my sisters are doctors. One in a hospital the other a naturopath. So I'm lucky to have good support. And I'm...
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    Thanks, lots of good info on that site. My...

    Thanks, lots of good info on that site. My Rheumatologist is on the list. Fortunately, he's published lots of papers on Wegeners, I found out. unfortunately, I tried calling him and a rheumatologist...
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    Thank you, that's good advice.

    Thank you, that's good advice.
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    Thank you for your response. I was only diagnosed...

    Thank you for your response. I was only diagnosed as recently as the end of October. I had a narrowed bronchus I've been having surgeries for since last year. My pred dosage has decreased. I'm...
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    Thanks for the information! That sounds awful. I...

    Thanks for the information! That sounds awful. I hope your symptoms are far better now. I'm on methotrexate at the moment but hoping to switch to Rituxan as the Methotrexate has made me quite ill.
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    Hi Birdie, Yes, the pain was in my hands...

    Hi Birdie,

    Yes, the pain was in my hands before treatment. It's not quite as bad as it was but the nasal pain is getting worse each day. I previously
    had pain and swelling in my hands so bad I...
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    People reply so quickly! Thank you so much,...

    People reply so quickly! Thank you so much, Pete. That's good to know. My sis is a doctor and she seemed surprised as well by the pain since I've only gone down 5mg. I've had fewer mood swings in...
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    Sinus pain and headaches

    Hi, everyone!

    I was only very recently diagnosed, so all of this is new to me. I've been struggling a lot lately with the side effects to my medications, but I trust they are helping.

    I wanted...
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    Thanks again to everybody for the advice! I do...

    Thanks again to everybody for the advice! I do find that my coworkers have been supportive. They've even agreed to sanitize whenever they come to my desk (I'm the supplies person, so often I had...
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    That's really interesting, and good to know. ...

    That's really interesting, and good to know. Thank you. I didn't know that about pred and metabolism.
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    Thank you ALL so much for the advice. I think...

    Thank you ALL so much for the advice. I think you are correct that it is the pred giving me anxiety. I've been having a not-so-great time on it. I hope that once they eventually taper me down,...
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    Side Effect of Medication? Heart racing

    Hi, everyone! I've only recently been diagnosed, and have started on 30mg of prednisone and 25mg of methotrexate once a week. I've noticed I've been getting chest pain (not that unusual since I have...
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    Thank you for your advice! I was actually warned...

    Thank you for your advice! I was actually warned to avoid sick people and to sanitize a lot but I wasn't sure if it meant I was more likely to get sick or if it was more dangerous to get sick now...
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    Thank you for sharing these! This is very...

    Thank you for sharing these! This is very informative.
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