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  1. Thread: Cryotherapy

    by jmq
    Replies
    3
    Views
    707

    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...
  2. Thread: Wegners in ears

    by jmq
    Replies
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    3,871

    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:
  3. Thread: Wegners in ears

    by jmq
    Replies
    14
    Views
    3,871

    Re: Wegners in ears

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

    by jmq
    Replies
    14
    Views
    3,871

    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
  8. Thread: Wegners in ears

    by jmq
    Replies
    14
    Views
    3,871

    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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    Ruxience Biosimilar for Rituximab

    Me too. My insurance (BCBS) did not approve Rituxan/Rituximab for my infusion. Instead they are making me take Ruxience biosimilar.
    I would be interested in any feedback on this drug.
    I'm...
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    Sticky: Re: Wegeners Granulomatosis / GPA specialists

    Specialist name: Dr. Athan Tiliakos, Emory Clinic, Emory Hospital
    Location (Country/State/City): United States / Georgia / Atlanta
    Area of specialisation (e.g. Rheumy, Immunologist etc):...
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    Re: Atlanta recommendations (again)?

    I live in Atlanta and I see Dr. Tiliakos at Emory Vasculitis Center. I've been with him about 3 years and he has been great.
    I was in remission and seem to be just starting to have a flareup and...
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    Re: Flare up and Rituximab route questions

    I had Rituximab for about 2.5 years (every 6 months). After 2.5 year4s, my labs looked so good the dr suggested we skip an infusion to see if I was in remission.
    I stayed in remission so we...
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    Possible GPA flareup in the ear

    I have GPA and was in remission for 3 years after 2 years of Rituximab infusions (twice a year). I had Covid in early December and, while it wasn't too bad, (just felt like a respiratory virus /...
  16. Thread: Anyone in Atlanta?

    by jmq
    Replies
    7
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    5,062

    Re: Anyone in Atlanta?

    Hi Kathy,

    Sorry I am just reading this message. Working all day today (7/27) in Kennesaw so my schedule is very limited. Are you in ATL through the weekend or at least tomorrow? Tomorrow I am...
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    Re: Rituxan maintenance

    Thatís totally consistent with what Iíve heard.
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    Re: Rituxan maintenance

    Hi,

    What you describe is what I have and go through. I am 56 years old. My disease started in my lungs and they diagnosed it pretty quickly (in about 9 months). It was also affecting my...
  19. Thread: Anyone in Atlanta?

    by jmq
    Replies
    7
    Views
    5,062

    Re: Anyone in Atlanta?

    Hi Kathy,

    Thank you for responding. I have family in Florida. Maybe, next time I go down to visit, I can call you to see if it's convenient for you to meet. Or we could meet half way?
    Not sure...
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    Re: In need of new rheumatologist in Atlanta, GA

    Thanks Pete. That's very helpful. I plan on charting those as well. Although Villa Forte has always told me that just the numbers are not a good indicators of a flare so not to act too quickly on...
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    Re: In need of new rheumatologist in Atlanta, GA

    Pete,

    They do all those blood test panels you mention on me as well as the urinalysis. Which are the specific test/numbers you monitor the trend of that are more the true indicator that you are...
  22. Thread: My introduction

    by jmq
    Replies
    20
    Views
    4,169

    Re: My introduction

    Yes, I agree with Alysia. That's what they did last week when I had my rituxan again (2nd time this year). I go for the 2nd round of the 2nd infusion this Thursday. I'll pay attention to what...
  23. Thread: My introduction

    by jmq
    Replies
    20
    Views
    4,169

    Re: My introduction

    Hi Ellen,

    Welcome. I had a similar introduction to this disease as yours. I had never been sick in my entire life before this hit me. Was also diagnosed as a pneumonia with masses in my lungs....
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    Re: In need of new rheumatologist in Atlanta, GA

    Pete,

    What about your lab work, who monitors your ANCA markers through the year? and how often do you get blood work done?
    Do you have the infusion regardless of what the blood results are?...
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    In need of new rheumatologist in Atlanta, GA

    Hi there,
    My rheumatologist here in Atlanta, GA fired me because I went to the Cleveland Clinic to consult with Dr. Villa Forte twice. She told me I couldn't have two rheumatologists and told me...
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