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Thread: Anyone have kidney pain? Tingling in legs?

  1. #11
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    Thanks guys, I will continue to pursue a drug free goal, but I'm still quite a ways away from that, so no need to stress out about it right now (even though it bummed me out for a bit after the appointment - but a bunch of other great stuff came out of the appointment that trumped it). I totally trust my doc, she is a Weg/Vasculitis specialist and has worked at Mayo and with Dr. Specks. She told me that her opinion is based on what she has seen in her practice with her Wegs patients. I have some time still to solidify our relationship before I start challenging I'm still tapering pred (and she's conservative, so we're tapering 1mg per month - I'm at 13mg now)

    Anna, I hope this clears up for you. You are a poster child in more ways than one. You're a total inspiration and I too hope to be able to pull off the achievements you have after dealing with this WG speed bump in my road of life. We'll chat on Skype.

  2. #12
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    Thanks Marta, your comment made my day, and I feel pretty crappy today, so the pick me is much appreciated Will look for you on skype.

  3. #13
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    Quote Originally Posted by marta View Post
    Hey Anna,

    Sorry to hear about this new-ish development. I've been thinking about you recently. I can't add anything wise to your question because I've not been down that particular road, but I am going to say that I've been having some headache activity lately so I went to my doc (the good one - the rheumy) and told her about it and said I'd like to do something to nip it in the bud before it goes to a place that we have to start all over again with the heavy duty meds and high pred, and she agreed and has put me on imuran. I just took my first one today. You and I had our RTX at the same time, same day in fact - I was thinking about you getting infused while the magic elixir was getting pumped into me, so I think we might be getting some of our old symptoms at the same time.... just food for thought.

    I also told my doc that I would like to work towards a drug free remission and she told me she doesn't believe that it really works. She said she believes (and she made sure I know this is her opinion only) that Wegs is always smouldering underneath and we don't know what sets off a flare so she believes that a maintenance drug for ever is the way to go the longest without having a flare. I said I'd really like to try going med free and she said in that case I'll have to find a different doctor. She sounded somewhat serious, but I think I'll try and work on her when I get to a better place, but that's a ways away yet. I know you've been med free for a long time, but maybe popping some maintenance drugs for a bit might help and then you don't have to go on pain meds, which we all know what can happen with that route....

    Hope you feel better my friend. Sending you good vibes, and still looking forward to going for a run or a bike ride together sometime in the future... or even a ski
    Marta, I recently had headache and when the preds was increased it went away. ??? who knows...

  4. #14
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    Thaks Rose,

    I'm now at 12mg - the lowest I've been at since the start of it all in May 2010. I'm so excited and don't want to go up on the pred just yet. I will see how the Imuran kicks in. I'm on day 6 of it now. Seems to be subsiding somewhat. Anyone know how long it takes for Imuran to do it's magic?

    I'm happy to hear that you don't have the headache anymore. Wooo hoooo!!!! May it stay that way indefinitely.

  5. #15
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    I think Imuran starts working farily quickly like ctx and mtx.
    Phil Berggren, dx 2003

  6. #16
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    Quote Originally Posted by marta View Post
    Thaks Rose,

    I'm now at 12mg - the lowest I've been at since the start of it all in May 2010. I'm so excited and don't want to go up on the pred just yet. I will see how the Imuran kicks in. I'm on day 6 of it now. Seems to be subsiding somewhat. Anyone know how long it takes for Imuran to do it's magic?

    I'm happy to hear that you don't have the headache anymore. Wooo hoooo!!!! May it stay that way indefinitely.
    I shouldnt talk too fast as had slight headache today but is now gone. staying on 5mg of preds for now daily. also we have some humidity right now and everyting still affects my sinuses so that could be the headache cause. usually we are 15% or less so 25-30 % is quite a change.

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