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Thread: Vancouver, BC, Canada?

  1. #21
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    Sangye and Jolanta that is what my rhuemy thinks, if I can't seem to wean off the prednisone slowly then it means I am flaring...my ears got full and sinus more stuffy. Hope I made sense. My blood pressure was low today 94/73.

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    I start to ache all over, my fingers, wrists, it feels like last year when I had a flareup. So I am trying to go very slow this time. I will do as you and half the 1mg pill and maybe that will work
    last year it was around 5.75 that I flared
    Jolanta

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    Moyan, I agree with Sangye about upping the pred on your own. I have done it and think I may being doing worse now because of it.

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    Jolanta, have you had joint involvement with Wegs? If so, can you tell the difference between Wegs joint pain and pred-taper joint pain?

    I'm assuming I'll be able to tell the difference. For me, the Wegs joint pain is very distinctive. Between the 3rd and 4th ritux infusion last month, I got weird random joint-ish pain that lasted a day. I can't even call it joint pain, really. It came on suddenly and migrated down a finger or wrist very rapidly. Kind of like I was under a scanner or something! It wasn't nerve-like, either. It came and went. I knew it wasn't Wegs, though.

  6. #25
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    Quote Originally Posted by pberggren1 View Post
    Moyan, I agree with Sangye about upping the pred on your own. I have done it and think I may being doing worse now because of it.
    Thank you Phil. The reason is it is easter and no doc is "at home". My wg attacks the kidneys so.... When the infection in my foot acted up, both the ER doc and my internist recommended to double the pred dose.
    Will see a doc as soon as possible, but 4 hours waiting in ER is not appealing, just to hear add pred, LOL

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    The emergency rooms are aweful. I called my hospital and told them that I got terrible care when I was there. I gave them my piece of mind. When I stayed in the ER the ER physician tried to kick me out and I told her, " Hey, I did not ask for Wegeners disease! This is a horrible disease! I said some other things and she got the picture and started to be a real doctor! I even told the other doctor who was trying to blow smoke up my hemorrhoids and he knew not to mess with me. So I have become a very tough Wegener's patient. You really have to fight for your health care rights and be an advocate to yourself or have someone do that for you.

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    That's so true! All of my ER docs have had the "I can't believe you have a dx of Wegs and you're still alive" look in their eyes, though. They take Wegs seriously but they don't always take the complications seriously. So if they rule out active Wegs (eg lung hemorrhage) they think the rest is a walk in the park. They don't understand that I'm in horrible shape on a regular day. Every so often I get a doc who says "You know best-- what needs to be done?" It's such a relief, because if I don't know what to do I can just let them take charge.

  9. #28
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    Elephant, maybe you are training to become a mom of teenagers
    Sangye, I so envy you hav ing the knowledge to suggest what to do.
    As of now I will mention cellcept instead of the azathioprine, seems to be worth a try. And ask him to look up pred, does an internist often prescribe that?
    Moyan

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    I am a tough little elephant. Usually I am sweet as pie and very cheerful! The good doctors will ask what can we do, just like Sangye stated. I really don't want to get that way, It is too bad that I have to stump my elephant feet to get their attention. "Wake up and smell the darn coffee." So good to get steam out!

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    Moyan - Regular gps do prescribe steroids. Probably too much in fact. All docs use them to bring down inflammation, and I know that recently, when my husband had strep they wanted to start a course of steroids rather than antibiotics. He argued with the internist a little and got the antibiotics, which cleared things up in a few days.

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