Search:

Type: Posts; User: jmq

Page 1 of 3 1 2 3

Search: Search took 0.00 seconds.

  1. Thread: B Cells

    by jmq
    Replies
    1
    Views
    131

    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...
  2. Replies
    0
    Views
    105

    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...
  3. Thread: Flare up Freak out

    by jmq
    Replies
    9
    Views
    759

    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...
  4. Replies
    9
    Views
    531

    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...
  5. Replies
    5
    Views
    252

    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...
  6. Replies
    5
    Views
    252

    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...
  7. Replies
    5
    Views
    252

    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...
  8. Replies
    1
    Views
    183

    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...
  9. 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...
  10. 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...
  11. 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...
  12. 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...
  13. Thread: Cryotherapy

    by jmq
    Replies
    3
    Views
    1,076

    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...
  14. Thread: Wegners in ears

    by jmq
    Replies
    14
    Views
    5,829

    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:
  15. Thread: Wegners in ears

    by jmq
    Replies
    14
    Views
    5,829

    Re: Wegners in ears

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

    by jmq
    Replies
    14
    Views
    5,829

    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...
  17. Replies
    19
    Views
    4,646

    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...
  18. Replies
    23
    Views
    5,348

    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...
  19. Replies
    23
    Views
    5,348

    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
  20. Thread: Wegners in ears

    by jmq
    Replies
    14
    Views
    5,829

    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...
  21. Replies
    19
    Views
    4,646

    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...
  22. Replies
    19
    Views
    4,646

    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...
  23. Replies
    19
    Views
    4,646

    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...
  24. Replies
    31
    Views
    34,866

    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):...
  25. Replies
    7
    Views
    4,144

    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...
Results 1 to 25 of 53
Page 1 of 3 1 2 3