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  1. Replies
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    I've been in a similar situation as of recently. ...

    I've been in a similar situation as of recently. Since diagnosed 3 years ago I've loosely been following my anca out of interest. I was high positive c anca and pr3 at diagnosis. They both went...
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    Hi Sunrise, welcome! You mentioned Mt. Sinai......

    Hi Sunrise, welcome! You mentioned Mt. Sinai... Is this where you'll be going to see a rheumatologist?! Hopefully one in the Vasculitis center. There are some of the best docs there who are very...
  3. Hi David, I have neuropathic problems in one of...

    Hi David, I have neuropathic problems in one of my feet/legs and likely permanent damage. I have similar feelings among others. Massage can help although for me the foot bath with hot hot water...
  4. Hi Elena! They've been talking about this here...

    Hi Elena! They've been talking about this here and are starting the trial as well. ( BC, Canada) unfortunately I don't meet the criteria however it seems to do well with other things so definitely...
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    Hello! My experience has been a creeping up CRP...

    Hello! My experience has been a creeping up CRP with persistent or worsening symptoms over a few months. An elevated CRP isn't a big concern for me alone however if it's up 2 months in a row I...
  6. Hey Birdie, I was taking Azathioprine for a...

    Hey Birdie, I was taking Azathioprine for a couple years so I can't speak much on long term effects but I did experience a major sensitivity to sunlight as well as more skin issues (sun?) while...
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    Hey Birdie! Here's my two cents! I'm not sure...

    Hey Birdie! Here's my two cents! I'm not sure what your taper schedule looks like but if you're feeling good at 4 stay there and continue your taper. My doc hasn't been concerned when my crp is...
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    Hey Jimmy, I think 4-6 is pretty on point. ...

    Hey Jimmy, I think 4-6 is pretty on point. Your first one may be closer to 6 while the second one closer to 4. I'm wondering, what does your doc say about taking rituxan and azathioprine?
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    Try to reach one of the above mentioned. There's...

    Try to reach one of the above mentioned. There's another great wegs specialist there as well but his name isn't coming to me. When trying to locate 'the best' wegeners specialist here it led me to...
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    Hey Tanya! I'm out here on the westcoast. Mt...

    Hey Tanya! I'm out here on the westcoast. Mt Sinai will be the best place for you - along with the doc vdub mentioned there's leading vasculitis/wegeners specialists Dr. Carette and Dr. Pagnoux.
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    Hey Carrie, Last year I had problems with...

    Hey Carrie,

    Last year I had problems with my left Achilles' tendon and heel. We didn't think much of it until I had similar symptoms and pain on my right side. When it started I was at the...
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    Each go around we hope the taper is more...

    Each go around we hope the taper is more successful than the last with no real knowledge to how or why I think. (I've read several tapering plans) I went through my first bout determined to get off...
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    Hey! I'm just across the water in Victoria and...

    Hey! I'm just across the water in Victoria and have met a few others on here from BC. Welcome to the club - I'm still fairly new with everything but have picked up a ton of info/support from others...
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    We must be on the same boat... I just had number...

    We must be on the same boat... I just had number 11 this past Monday and 12th scheduled for November. All since march of 2013. I hope for an end too :-). Some of these have been repeats, due to my...
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    Hey Lisa! Did you get a response from Dr....

    Hey Lisa! Did you get a response from Dr. Carette? What was his recommendations?
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    Thanks! My docs are doing a great job so I feel...

    Thanks! My docs are doing a great job so I feel confident I'm getting good treatment. However there's questions that could probably be answered more thoroughly by someone who has seen more Weggies...
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    Please Help - NEED WG specialist

    Hi everyone! Well I have a great team of doctors however none are experienced (much) with Wegeners. My GP would like me to see a doctor who specializes in WG. It's possible I'm in my first...
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    Hi Lisa! I'm just across the water in Victoria! ...

    Hi Lisa! I'm just across the water in Victoria! You're the closest person I've found so far. I was diagnosed one year ago. I think if your rheumy and ENT listen well to you and provide or help...
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    Our range here in BC, Canada is

    Our range here in BC, Canada is <5. There was no concern from my doctors at 17. I myself wonder how high a cold/flu can make it go....
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    Hey RudiK, what was it on your blood tests that...

    Hey RudiK, what was it on your blood tests that indicated a flare? I'm fortunate to usually get my results same day. Also I'm not sure about length of time on imuran once I've dropped pred. Sorry...
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    Drug free remission sounds good Dale - it's what...

    Drug free remission sounds good Dale - it's what I'm hoping for. What treatment did you have, azathioprine? I'm wondering what the protocol length is. Sounds like your diagnosis day was similar to...
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    Interesting! Without being a hypochondriac I try...

    Interesting! Without being a hypochondriac I try to be well aware of my body and symptoms. Tricky for me as I haven't had a flare - only my initial brutal battle. I feel a little more nervous as I...
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    I recently enjoyed the spoon theory....I think...

    I recently enjoyed the spoon theory....I think someone posted it here already... Butyoudontlooksick.com. Excellent explanation of ' a day in the life...'
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    Hey David, I have wondered this many times. ...

    Hey David, I have wondered this many times. Since diagnosis almost a year ago everything seems to be better and going well. Generally I feel ok. I don't have a wegs specialist so we are just...
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    Your first flare?

    How did it happen, how long after diagnosis, at what point in medication..... I'm curious about people's first flare and thereafter. I'm coming up to a year since I was really ill and diagnosed. ...
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