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

  1. #191
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    Default Re: How to know when you're having a flare

    Right, initial RTX was a couple before they switched to CTX for faster results. I also had RTX twice after last flare after Covid vaccination. Recently I tried Avacopan or Tavneos but developed three inflections so had to stop it.
    Knowledge is power! Wisdom is using it to make good decisions!

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  3. #192
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    Default Re: How to know when you're having a flare

    It is interesting how differently it effects individuals. I had a round of RTX once a week for 4 weeks and then every 6 months. My ANCA was still positive at the time I contracted COVID and was concerned, but everything was negative following. I did not opt to get the jab due to this and other concerns. So far numbers are still good, just have joint pain and fatigue sometimes.

  4. #193
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    Default Re: How to know when you're having a flare

    Hello Summer! It's interesting that my DIL has a sister named Summer and she refers to her as SumSum. Also, my wife and I live in Florida and have considered moving and Greenville is one of the places we were looking at. Very nice area. I was DX in July 2017 by a Nephrologist. Five other doctors including infectious disease doctors could not figure out what was wrong with me over a 4 month period. When my labs showed my kidneys had failed, I checked into a nearby hospital. My Nephrologist is very educated about Wegener's so he manages both my kidney function and the Wegener's. We got the disease in remission using prednisone, azathioprine, and Rituxan by September 2019. So, about 2 years. Since that time in 2019, I have had 2 times where I was "sick" and couldn't pin the sickness on anything like the flu or headcold so I would call my Neph and tell him that I am concerned about a flare. He would have me take azathioprine for about 3 months and add the Anca test to my labs to check for that. Both times seemed to turn out ok with no trace of Anca. It's one of those things where you don't feel right but just can't identify what is causing the sick feeling. My Neph has also told me when I asked him about me having a flare. He said he looks at my urine test for abnormal amounts of protein and blood. Hope this helps. Shoot me an email if you have anything else you want to ask.

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