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    Re: RTX and heart damage

    I wish I saw this thread before I just posted a new thread. I have to begin immune therapy also. My immunologist is recommending subcutaneous rather than IV. It will be every week in my home and will...
  2. immune deficiency treatments and causes (probably caused by GPA treatments)

    I relapsed with renal failure May 2022 and had 7 courses of plasmapheresis along with prednisone, Cytoxin and Tavneos. Hematologist tested my IgA, IgG and IgM, and resistance to pneumonia and other...
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    Re: Let's talk about "limited" Wegeners...

    I have been grateful for all the new drugs but had not thought about the implications of being the first generation of GPA patients with access to newer treatments! Very insightful.
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    Re: New diagnosis in Dec 2022

    I copied and pasted this info about how Rituximab works:
    "Normally, the immune systemcreates inflammation to protect the body from infections. But, in someconditions, a group of cells in the immune...
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    Re: Kidney Involvement

    Yes, this was very informative and helpful! I think what was meant by sudden kidney failure as opposed to normal kidney disease is that in normal kidney disease (not caused by GPA) your kidneys...
  6. Re: New medication approved for ANCA vasculitis.

    I was on cytoxan and prednisone initially and then cytoxan and avacopan to get me into remission. Now I stay on the avacopan and get rtx every 6 months to stay in remission.
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    Re: Kidney Involvement

    I found this info very useful. I have also wondered about the diet. I had been waiting for months for an appointment with a renal nutritionist and she was the one who put me on the very strict diet....
  8. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I forgot to say that I also received gammaglobulin therapy when I had Covid.
    Is the evushield to provide antibodies to everything or just covid? I will be getting Xembify.
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    Re: How are you doing ?

    The avacopan is taken along with cytoxan but replaces prednisone (at least in my case). Now my kidneys have improved enough to get off cytoxan and I'll get rtx every 6 months in addition to avacopan...
  10. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I got vaccine plus 2 boosters. I had a breakthrough covid case between the 2 boosters. After the second booster I had a dramatic sudden relapse with kidney failure but looking back I think there were...
  11. Re: New medication approved for ANCA vasculitis.

    I am on this drug! As soon as I started it in July they could take me off prednisone. It IS expensive. I'm on medicare with a PDP that I change pretty much every year. My insurance covered it with a...
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    Re: Kidney Involvement

    Thank you for your words of encouragement.
    I am happy to hear that your kidneys improved. I'm trying to remain hopeful.
    I'm on a very strict renal diet with 40g max protein daily and it has been a...
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    Re: How are you doing ?

    See, I knew I should realize how lucky I am and count my blessings! How do you manage your diet? This has been very hard for me, the information seems to change and you have to be careful when you...
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    Sticky: Re: Wegeners Granulomatosis / GPA specialists

    Any GPA docs that are nephrologists? My experience is that division of rheumatology doesn't treat you if your kidneys become involved.
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    Re: Kidney Involvement

    After 7 years of remission while being treated at a vasculitis center I had a relapse. Out of nowhere I had sudden kidney failure (first time for renal involvement) and was in hospital for some time....
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    Re: How are you doing ?

    You are a saint for asking! I’m feeling pretty low. I haven’t been on this site for many years (6) because I was in remission. This past April after 7 years remission I had a sudden dramatic relapse...
  17. Hopkins since renal development not being seen in vasculitis center

    Anyone else going to vasculitis center at Johns Hopkins? I relapsed in May and now have renal involvement. Dr Geetha, nephrologist is supposed to be treating me but I’ve never seen or talked to her....
  18. Re: cervical changes in menopausal woman due to Methotrexate?

    Thanks Rose. I saw my gynecologist due to spotting and had several tests and that is when I found out about dramatic thinning of cervical wall. I had just had a negative pap smear in December so we...
  19. cervical changes in menopausal woman due to Methotrexate?

    Has anyone heard of Methotrexate causing changes to women's reproductive systems? I have been on Methotrexate since Dec. 2015 for maintenance. I have had radical changes to my cervix since being on...
  20. high potassium level caused by Methotrexate?

    I have been in remission a little over one year. I currently take 12.5mg of methotrexate once a week. I currently get lab work every 6 weeks. My most recent labs show a very high level of potassium....
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    Most of the time I can't smell. (It doesn't...

    Most of the time I can't smell. (It doesn't usually bother me except for when the lilacs or hyacinth are in bloom.) But just like someone else mentioned, I will suddenly smell something. Strangely,...
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    Sticky: Specialist name: Dr. Rebecca Manno at Johns...

    Specialist name: Dr. Rebecca Manno at Johns Hopkins Vasculitis Center
    Location (Country/State/City): Baltimore, MD 21029
    Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist who...
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    I second the advice to get on a waiting list for...

    I second the advice to get on a waiting list for any open appointments. Also, maybe see if the doc that diagnosed you can put pressure on for a sooner appointment. Don't be afraid to be pushy. It's...
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    I was diagnosed May 2015. My rheum didn't use the...

    I was diagnosed May 2015. My rheum didn't use the term "limited GPA" but my involvement was confined to upper respiratory system. Prednisone made me feel better all over than I had in probably 30...
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    Diagnosed May 2015. Had 4 infusions of rituximab...

    Diagnosed May 2015. Had 4 infusions of rituximab (1 weekly for 4 weeks) in July 2015. Also treated at same time with high dosage Prednisone because there is a long period of time before you know if...
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