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    Re: COVID 19 and Wegener's - musings

    they claim extra weight is good when older, I'm carrying mine too. I can be sick for awhile. I did lose 5 in the 2 weeks I was sick, unfortunately it has come back.

    Hard to know what is true...
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    Re: COVID 19 and Wegener's - musings

    Love your thoughts on this. Background 1st I was diagnosed back in 2014 with GPA due to a bout of double pneumonia followed a couple months later with kidney failure. I have been getting Rituxin...
  3. Re: Any good wegeners doctors in or near Sun City or Phoenix Arizona?

    Thanks for the info, just getting around to this now. Was still working with my Dr. in MN. I got lucky as I went to Mayo in MN back in 2014 and have an ID in their system. I asked for an...
  4. Re: Any good wegeners doctors in or near Sun City or Phoenix Arizona?

    I called Mayo in Phoenix and they don't work well with Medicare, told me there would be higher co-pays. I had checked in with one of the satellite clinics last visit and they didn't take it at all. ...
  5. Any good wegeners doctors in or near Sun City or Phoenix Arizona?

    I am moving to Sun City AZ and need to find a good Doc for my Wegeners GPA. Any one know of one??
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    Re: Rituxan maintenance

    Just went to Dr. today and all is good. Labs are all normal. We have decided to wait till labs show a problem or I have signs of a flare. He explains that the CD20 part of my B cells gets wiped...
  7. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Sorry just read this after posting. I was diagnose in 2014 after lungs and kidneys were involved. Did the whole prednisone, plasma exchange and 4 weeks of Rituxin infusion 1 a week. I got off the...
  8. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Just had long talk with my Dr. about that today. He says they don't use those numbers to see where you are at. He goes by ANCA, CRP and sed rate. Just had mine done and all are fine. Been 7 months...
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    Re: Rituxan maintenance

    Thanks so much for info. I had my first infusion in 2014, took the 4 week process. 1 each week. I also had my blood cleaned by that machine, I forget the fancy name for that. Was in hospital for...
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    Re: Rituxan maintenance

    I have been getting Rituxin every 6 months for maintenance since 2014. I have no side effects and take nothing else. I do get a breathing treatment at time of infusion. I have blood tests done...
  11. Thread: RTX and life

    by loisann11
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    Thanks, high dose prednisone almost did me in, I...

    Thanks, high dose prednisone almost did me in, I had every side effect that was listed and a few extra I think. Not sure how low dose would do but did mention to last doc. Turns out ear infection...
  12. Thread: RTX and life

    by loisann11
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    My main ones are in the thumb to hand joints,...

    My main ones are in the thumb to hand joints, knees come and go, arches in foot acts up now and then, frozen shoulder, right now neck collar bone. Been told now about gouty arthritis due to higher...
  13. Thread: RTX and life

    by loisann11
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    Thanks, I have been to the Mayo as a 2nd opinion,...

    Thanks, I have been to the Mayo as a 2nd opinion, but I am about 6 hours away for real care. labs seem to be Ok from what they tell me but each Dr. seems to have a different opinion what all the...
  14. Thread: RTX and life

    by loisann11
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    Thanks! No prednisone. I'm 66 so aches and pains...

    Thanks! No prednisone. I'm 66 so aches and pains are kinda normal I guess but it's getting so all joints hurt, no ambition, just wondering if normal or for wegs or age. I am getting ear infection...
  15. Thread: RTX and life

    by loisann11
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    RTX and life

    I have been getting rtx every 6 months since April 2013. So far it does the job of killing my immune system which is what it is suppose to do. No side effects for me from it and it takes about 5...
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    Poll: I have been getting rtx every 6 months since...

    I have been getting rtx every 6 months since April 2013. So far it does the job of killing my immune system which is what it is suppose to do. No side effects for me from it and it takes about 5...
  17. Thread: Rituxan

    by loisann11
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    Thanks so much for the info. I do have small...

    Thanks so much for the info. I do have small amount of blood in urine, doc says normal for me. My GFR used to be under the 59 so stage 3 kidney disease. But last labs showed up to 72. But I have a...
  18. Thread: Rituxan

    by loisann11
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    I take no other drugs for this. Haven't since got...

    I take no other drugs for this. Haven't since got off the prednisone almost 2 years ago. I do lab work every 3 months and have a great kidney doc that has others with this. He did great things to...
  19. Thread: Rituxan

    by loisann11
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    I had pneumonia and was suspected of GPA over...

    I had pneumonia and was suspected of GPA over 2012 Holiday season. I was officially diagnosed and treated Easter of 2013. I had more problems at Easter and went back to hospital now with kidney...
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    I like to think this is what they call remission....

    I like to think this is what they call remission. I feel good and have no real symptoms. I feel pretty much the way I did before this mess started. Hope it lasts a long time. Good luck!
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    Did you take any drugs to treat the Wegeners? I...

    Did you take any drugs to treat the Wegeners? I did and now all my ANCA tests are negative. That was the purpose of all the drugs. I also have no B blood cells and normal counts on everything...
  22. I was diagnosed in 2013. I had pneumonia and...

    I was diagnosed in 2013. I had pneumonia and kidney involvement and was first treated with the usual high dose prednisone etc. I did 4 IV doses of the Rituximab in May. It took about 6 hours for each...
  23. Don't cave... if you are getting good care where...

    Don't cave... if you are getting good care where you are. I went to Mayo for second opinion. I saw a Kidney specialist since I have issues there. Personally I found them no better than my Current...
  24. I had good Dr. just couldn't stay in PHX. much...

    I had good Dr. just couldn't stay in PHX. much longer. Needed to get home to MN. They couldn't do biopsy on my lungs since they were in real bad shape. Spitting up a lot of blood at the time with...
  25. This is all fairly new to me. I started with...

    This is all fairly new to me. I started with problems just before Christmas last year. Double pneumonia. Was at Banner in Sun City Az, Dr I had was looking for cause and came up with possible WG. ...
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