Search:

Type: Posts; User: Pete

Page 1 of 20 1 2 3 4

Search: Search took 0.02 seconds.

  1. Replies
    185
    Views
    89,560

    Re: Happy Birthdays Thread

    Happy birthday, Chief!! Glad youíre enjoying your day.
  2. Thread: Avacopan

    by Pete
    Replies
    26
    Views
    7,376

    Approved to treat AAV

    From the Vasculitis Foundation: https://ir.chemocentryx.com/news-releases/news-release-details/chemocentryx-announces-fda-approval-tavneostm-avacopan-anca
  3. Replies
    3
    Views
    105

    Re: Rituximab maintenance

    Iíve been getting rtx since 2014. Started with two 500 mg spaced two weeks apart. In 2016, I graduated to an annual 1,000 mg dose. In 2020, I was changed to 500 mg every six months (new research said...
  4. Replies
    5
    Views
    135

    Re: Cyclophosphamide (Cytoxan)

    I was on cytoxan for 16 months. The dosage (as I recall) is based on your weight. I took 50 mg 3x daily.

    I was on 40-60 mg of pred the whole time. I regained the 15 lbs I lost at disease onset...
  5. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    jmq

    I think seeing such a specialist wouldnít hurt ó and might help.

    i had tinnitus for many years before GPA thanks to no hearing protection in a variety of loud environments. I have about 40%...
  6. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    jmq

    You may want to see a an ENT or neurologist about your hearing issues.
  7. Replies
    9
    Views
    341

    A great doctor wants our help

    I met with Dr Alexandra Villa Forte at Cleveland Clinic yesterday for a check-up and rtx infusion. The infusion and check-up went well, but, as we talked, she asked me what she could do to be a...
  8. Thread: Third Vaccine

    by Pete
    Replies
    41
    Views
    1,646

    Re: Third Vaccine

    I had my rtx infusion today (500 mg). Dr Villa Forte gave me a choice: get a COVID booster no later than tomorrow or wait 5 months after infusion (and one month before my next one). I opted to wait....
  9. Replies
    4
    Views
    273

    Re: Does any one else have days like this?

    Hi Lily

    You're grieving the loss of your grandparents. You're dealing with the aftereffects of a dangerous disease while dealing with another one that's chronic that probably caused a major change...
  10. Replies
    7
    Views
    605

    Re: Ongoing GPA symptoms with negative labs

    Hi Nancy,

    Have you asked your rheumy to consult with a vasculitis specialist? Perhaps someone at Cleveland Clinic or Mayo Clinic can get things sorted out for you.

    Good luck!
  11. Thread: Been a minute

    by Pete
    Replies
    2
    Views
    190

    Re: Been a minute

    Hi Lily

    There hasnít been much activity here lately. I guess some folks post more on the Facebook pages.

    Glad to hear youíre doing well. I am, also.
  12. Replies
    24
    Views
    1,800

    Re: Managing symptoms and treatment for a flare

    The Vasculitis Foundation and the American College of Rheumatology just published their guidelines and recommendations for treating ANCA Associated Vasculitides.
    ...
  13. Replies
    14
    Views
    11,773

    Re: Pred Taper Completed

    As of yesterday, Iíve been off daily pred for three years. Still feeling good!
  14. Replies
    2
    Views
    225

    Re: We have got a healthy baby

    Kitekite

    Congratulations on the birth of your strapping boy!! Glad to hear all is well!!
  15. Replies
    9
    Views
    1,036

    Re: I am a new member & fairly newly diagnosed

    KathyTPA

    You might want to investigate this a bit: https://www.bizjournals.com/tampabay/news/2016/09/28/bay-area-hospital-joins-mayo-clinic-network.html

    You may be able to have your local doc...
  16. Replies
    3
    Views
    440

    Re: First post - diagnosed in 2012

    Welcome to the club no one wants to join.

    Your disease onset sounds like the first couple of weeks of mine. Glad you have a doc who is giving you proper care. Thatís the majority of the battle...
  17. Replies
    24
    Views
    1,800

    Re: Managing symptoms and treatment for a flare

    drz

    Wow!! You and your docs have their hands full to get you stabilized. Hope they do so quickly!!

    As for rtx. The drug itself doesnít seem to give me any side effects. I get a slight reaction...
  18. Re: Need a good Wegeners rheumatologist in Phoenix.

    Go for it!! You've got a lot to lose if you don't!! Good luck!!
  19. Re: Need a good Wegeners rheumatologist in Phoenix.

    Birdie

    Maybe itís time to get your Comgressman involved. The VA should be putting you first, not their f****d up bureaucracy.
  20. Re: Need a good Wegeners rheumatologist in Phoenix.

    Dirty Don This one’s for you...
  21. Replies
    2
    Views
    369

    Re: Rituxan side effects two weeks later

    I have no recollection of nausea as a side effect of rtx. You might want to check with your wegs doc and/or primary care doc. Just because you have wegs doesn't mean something else isn't going on...
  22. Replies
    14
    Views
    3,907

    Re: High Blood Pressure and Fast Heart Rate

    I met with my cardiologist today. I asked him about the cause of my elevated resting pulse rate. When I was younger and in great shape, my resting pulse rate was generally in the 60s. Now, at age 74,...
  23. Replies
    17
    Views
    1,474

    Re: Suspected Sneaky Kidney Involvement

    I ask out of ignorance and confusion: what analgesics can people with kidney issues take safely? I have stage 3 CKD thanks to GPA.
  24. Replies
    13
    Views
    1,354

    Re: Reactions to Covid-19 vaccinations

    I had a sore arm at the injection site for about 24 hours after both shots. About 18 hours after the second shot, I had flu-like symptoms that lasted for about 18 hours. I had chills, muscle aches,...
  25. Replies
    239
    Views
    42,107

    Re: Coronavirus and GPA

    This makes me a little nervous. I got 500 mg of rituximab four weeks after my second Pfizer shot.

    Autoimmune-disease drugs may reduce vaccine response; antibody treatments ineffective vs Brazil...
Results 1 to 25 of 500
Page 1 of 20 1 2 3 4