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  1. #1
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    Default Losing patience / covid

    Sorry, it's been a while since I've posted on this forum. I went through a period where it was depressing to see all of this information. But I also went through a period where I believe this forum saved my life.
    Just wanted to vent a little here, I am getting frustrated. About November of 2021 I begin to feel very very tired again and started having sinus issues again. My ANCA had been Sky High for a few years but I felt good and all of my other labs were normal. But I've spent all spring and summer feeling like crap. I'm nauseated exhausted dizzy daily headaches Etc. oh and who can forget the giant mucus blobs are back. It is beginning to weigh heavy on my mind.
    I had covid-19 in January despite the vaccines. I've heard so much about the side effects of the vaccines and of covid itself that it just makes me wonder if having the disease and the vaccines ended up flaring up some dormant side of this disease.

    Sent from my SM-A102U using Tapatalk

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  3. #2
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    Default Re: Losing patience / covid

    Welcome back @greenjeep!

    Getting Covid under control with vaccines that don’t trigger wegs flares will be a great blessing. Fortunately for me, the Pfizer vaccine has produced nothing beyond injection site soreness and flu-like symptoms for 18-24 hours following the injection. Since I get Rituximab to keep wegs under control, the vaccine doesn’t produce many Covid antibodies. Still, my wegs doc recommends the vaccine as long as it’s doing no other harm.

    I did get Evusheld in February and will get a second dose in a couple weeks. Unfortunately, there’s no test to see if it works beyond not getting Covid. I haven’t gotten Covid yet, so I guess it’s working.

    My wife and I have had a low profile lifestyle since early 2020. It’s boring and certainly not the retirement we were hoping for. I don’t go to the Y for exercise much now. During the winter, I’ll walk the indoor track there with a mask on if the neighborhood bike/bike trail is slippery.

    Anyway, I hope you get the relief you’re looking for.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Losing patience / covid

    Quote Originally Posted by Pete View Post
    Welcome back @greenjeep!

    Since I get Rituximab to keep wegs under control, the vaccine doesn’t produce many Covid antibodies. Still, my wegs doc recommends the vaccine as long as it’s doing no other harm.
    Over here in Finland the recommendation is to get the vaccine at the latest 1 month before the RTX infusion, or 6 months after the infusion. Had my fouth vaccinne in May. I guess we are now being offered a fifth vaccine, but just had my RTX so will need to wait.

    Had recently my wedding party with 100 people, was pretty sure I'd get Covid as its still around, but guess I avoided it. No one from my family has still had it (although my daughter had a rough case of the flu when covid was starting, but there were no tests available back then).
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Default Re: Losing patience / covid

    I had Evusheld months ago and am due to get another dose of it next week. I still get my vaccine boosters but Iím sure the Evusheld protected me much better.

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    Default Re: Losing patience / covid

    I haven't had Covid since the onset of the pandemic. I took all the vaccinations, and all went pretty well.
    But a few weeks ago I had a terrible headache, and a stuffed nose.
    I did a test, and it was positive for Covid.
    So I guess I had the 'Omicron' variant.
    since then I have little energy...

    Anybody else experienced this?
    Living with WG/GPA since june 2010...

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    Default Re: Losing patience / covid

    So sorry you are going through this. Since there is no more Evusheld available for us, I have become a recluse. Wearing N95 masks, no restaurants. My blood tests are showing I have no immune system, so they will be administering 6 months of IVIG, in addition to what I am already on.
    Christin, I am sending you hugs and prayers for you to deal with Covid hitting when we already have this horrible disease. You have every right to lose patience.
    This is the best place to vent, because we do understand the big picture.

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    Default Re: Losing patience / covid

    Quote Originally Posted by Masha View Post
    So sorry you are going through this. Since there is no more Evusheld available for us, I have become a recluse. Wearing N95 masks, no restaurants. My blood tests are showing I have no immune system, so they will be administering 6 months of IVIG, in addition to what I am already on.
    Christin, I am sending you hugs and prayers for you to deal with Covid hitting when we already have this horrible disease. You have every right to lose patience.
    This is the best place to vent, because we do understand the big picture.
    My situation is about the same. I wonder how much the IVGA infusions will help us. I had injections of it 60 years ago when we were injected in the butt with a big square needle and it made sitting down painful for days. Infusions should be much easier.
    Knowledge is power! Wisdom is using it to make good decisions!

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