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  1. Thread: Avacopan

    by jmq
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    27,720

    Re: Avacopan

    Thank you for the info. I also submitted a question to my rheumy at Emory via their portal and this is what he said:
    Avacopan has not been studied as a maintenance drug. The initial studies used...
  2. Thread: Avacopan

    by jmq
    Replies
    35
    Views
    27,720

    Re: Avacopan

    I am confused. I have a question similar to Razie's question.
    is Avacopan a replacement for Rituximab (or biosimilar) or a replacement for Prednisone?

    Jeannette
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    Re: Cyclophosphamide (Cytoxan)

    I did not get any nausea or vomitting side effects from Cytoxan. Just lots of hair loss.
    Agree with Pete, make sure you measure your water intake and take lots of water. I took Cytoxan because...
  4. Thread: B Cells

    by jmq
    Replies
    1
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    410

    B Cells

    How important are the B-cells and the B-cell count in the Wegners GPA treatments?
    My B cells are still zero after I got the last Rituximab infusion in April.
    My local Dr says I should not get...
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    How long does Cytoxan take to kick in?

    For those who have been on Cytoxan, how long does it take to kick in?
    I was told it takes less than the Rituximab infusion and as little as 2 weeks.
    I am at 100mg of cytoxan and going to 150mg next...
  6. Thread: Flare up Freak out

    by jmq
    Replies
    9
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    1,265

    Re: Flare up Freak out

    Hi PMarsh,

    I had a similar experience. After 2 years of Rituximab infusions (every 6 months), went into a drug-free remission. No infusions, no prednisone. Then stayed in this remission for...
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    Re: A great doctor wants our help

    Natty,

    I'm sorry for what you are going through. Isn't that a good malpractice case?
    I understand about Doctors egos. I was fired by my first local Rheumatologist because I went to the...
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    Re: Cyclophosphamide (Cytoxan)

    Everyone who has responded,

    Thanks for sharing. It gives me a better idea what to expect.
    I'm keeping my fingers crossed that I dont have to be on Cytoxan as well as Prednisone for very long...
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    Re: Cyclophosphamide (Cytoxan)

    Thanks for sharing that information on Cytoxan Pete! And thanks for the advice on the water intake. Thats exactly what they told me.

    Yes, like you, I have to do the same labs weekly to check...
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    Cyclophosphamide (Cytoxan)

    I have been put on Cyclophosphamide (Cytoxan) pill to help my hearing loss after a "supposedly" ineffective Rituximab infusion (two infusions 2 weeks apart) in March/April 2021.

    Drs think another...
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    Any Weggies in Atlanta?

    Hi,

    Is there anyone with Wegener's GPA in Atlanta, Georgia, USA who would be interested in meeting up?
    I posted this question on this forum 5 years ago and only got one response from a person in...
  12. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    Thank you Susan!

    They put me on Cytomax (in addition to 60mg of Prednisone) to try to stop hearing impact.
    I'm seeing an ENT dr and a neurologist but neither one of them knows what's going on.
    I...
  13. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    I had a virtual visit with Dr. Villa Forte at the Cleveland Clinic and she suggested I immediately go on Cyclophosphamide (aka Cytomax) to control inflammation and try to stop hearing loss. The...
  14. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    Hey Pete!

    I am seeing and ENT and a neurologist. all they have suggested is to put me back on a higher dose of prednisone (60mg) and taper by 10mg every week.
    Rheumy wanted to know if there...
  15. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    I am too experiencing hearing loss and bad tinnitus on my left ear.
    I had not linked that to the most recent Rituximab infusion which I got in April due to a GPA relapse caused by COVID.

    My GPA...
  16. Thread: Cryotherapy

    by jmq
    Replies
    3
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    1,363

    Cryotherapy

    Has anyone in the Wegeners group tried cryotherapy to reduce body inflammation?
    There are a lot of cryotherapy studios/spas popping up and I was wondering how effective it is.
    Or even what your...
  17. Thread: Wegners in ears

    by jmq
    Replies
    14
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    8,786

    Re: Wegners in ears

    Thank you for the info. I have another ENT appointment next week. Want to be able to ask intelligent questions. :scared:
  18. Thread: Wegners in ears

    by jmq
    Replies
    14
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    8,786

    Re: Wegners in ears

    What is a BAHA?
    Is that something that will make your ringing noise go away?
  19. Thread: Wegners in ears

    by jmq
    Replies
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    8,786

    Re: Wegners in ears

    Thank you sharing Pete.
    So losing some of your hearing was a direct cause of Wegeners?
    So whatever hearing loss I have now, it won't come back because it damaged the auditory nerve and it will...
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    Re: Biosimilar for rituximab

    I think the infusions are the best to contain it and for maintenance (twice a year). I was able to get off all medications and was like that for 4 years. I even stopped the maintenance infusions bc...
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    Re: New Here - Possible GPA with Nasal involvement

    Rae,
    I agree with drz. Keep at it and don't give up. Try different doctors or clinics if you are not getting anywhere. Hopefully it's not Wegeners. Be persistent and you'll get to the root...
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    Re: New Here - Possible GPA with Nasal involvement

    drz,

    How did your hearing loss come about? Asking because all the ear problems I'm starting to have. How did it start and progress?
    -Jeannette
  23. Thread: Wegners in ears

    by jmq
    Replies
    14
    Views
    8,786

    Wegners in ears

    I would like to hear of Weggies out there who have had Wegners impact their ears / hearing.
    I've been in remission for about 3.5 years (after Rituximab infusion) and things seem to indicate that I'm...
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    Re: Biosimilar for rituximab

    My experience was similar, it took about about 6 weeks to kick in for me . Be patient. It's going to work. But you need to set your expectations right.
    It took 6-8 weeks for me but I was very...
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    Re: Biosimilar for rituximab

    That's good to know. My insurance only approved the Ruxience this time around. It must be cheaper. If it's just as effective, I don't really care but I don't want to wait and find out it doesn't...
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