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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.

  5. #194
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    Default Re: How to know when you're having a flare

    Hey Summer,

    An easy sign for me that I am having a flare is it becomes difficult to use my hand or my my foot (around the wrist or ankle) sometimes itís one or the other and some times itís both. Could be right side or left or a combination of the 2. If that goes untreated then a red looking rash appears usually in my legs as well. Just some things I have noticed. Hope it helps

  6. #195
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    Default Re: How to know when you're having a flare

    What is the difference between a flare and relapse? Are they interchangeable terms? Began exercise again and started having joint pain, but expected some. My bloodwork has been good since checked in February and due to have redone in August. Had my two year aorta check and it was good as well. Joint pain elevates but subsides, never goes completely away. I'm curious to how much neuropathy might play into the pain in joints and muscles. Any thoughts?

    Thank you

  7. #196
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    Default Re: How to know when you're having a flare

    Quote Originally Posted by J@$0N View Post
    What is the difference between a flare and relapse? Are they interchangeable terms?
    I think this is mostly a matter of language.
    Other forum-members may correct me if I'm wrong, but I think a flare is a warning sign.

    Your initial symptoms can show up again, like jointpain or nosebleeds.
    If not treated well, your whole health may deteriorate sooner or later.
    Than you may have to face a full-blown flare, which can require long and intensive medical treatment.

    To make sure you make the right descisions always try to contact your GPA/Wegs-doctor in case of doubt.
    Living with WG/GPA since june 2010...

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  9. #197
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    Default Re: How to know when you're having a flare

    Hi All;
    I was diagnosed in 2009 (symptoms began 2008, maybe earlier). I figure I have enough experience to help with this question of knowing whether one is having a flare or not. The disease affects everyone a little differently, but for many it starts with sinus/upper respiratory issues, and/or joint pain. Those were my initial symptoms. If you have an increase in your initial symptoms it is most likely a flare and you should definitely get in touch with your doctor. When you have a flare it's like it weakens your system (it actually causes damage) and you may get all these little opportunistic infections or reactions. This may include a stuffy nose that no amount of sinus rinsing can clear, or increasing joint pain. I also found that I was getting hit with infections pretty much one after the other (stuffy nose, then maybe a week later a slight cough, then a minor eye or fungal infection, or swollen and sore joints, rash). In my case my flares tended to follow the same pattern but the symptoms were so slight and easily treated I often dismissed them. I wasn't seeing the whole picture. It is useful to keep a diary and make note of any days you aren't feeling up to snuff and your symptoms. This can help you in the future to identify whether your body is struggling and potentially having a flare. Stress will also weaken your body and can cause a flare so regular stress reducing strategies are useful. Good nutrition can also help with flares. You have to figure out what your potential flare triggers are and do what you can to counteract them. This only reflects my experience, but you might find parts of it helpful. Good luck on your journey.

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