Search:

Type: Posts; User: Pete

Page 1 of 20 1 2 3 4

Search: Search took 0.04 seconds.

  1. Thread: Back surgery

    by Pete
    Replies
    3
    Views
    235

    Re: Back surgery

    JohnS. Sorry to hear you’re still using a walker. Did the surgeon give any indication about when you might be able to walk unaided? Were you put into physical therapy to regain lower body strength?...
  2. Replies
    2
    Views
    5,014

    Re: New Member From Pittsburgh

    Snake Eyes

    Hi Mike,

    I'm sad to learn that your union wouldn't go to bat for you. It's bad enough to be sick, but when the people you count on to help you fail, that really sucks.

    Where are...
  3. Thread: Back surgery

    by Pete
    Replies
    3
    Views
    235

    Re: Back surgery

    Assuming it’s only one disk, and the orthopedic surgeon understands the travel requirement for your infusion, go for it! Hope you recover quickly!
  4. Re: Eustation tube dilation / Ear Popper mechanism

    I have Eustachian tube dysfunction in my right ear. It’s pretty intermittent and more of a nuisance than debilitating. I’ve not tried (or heard of) the ear popper. Hope you get relief soon.
  5. Replies
    4
    Views
    426

    I don’t feel sick

    Thirteen years ago today, I was diagnosed with GPA. I remember asking what the heck is that?? Bad news: Its not curable. Good news: It’s treatable.

    About twelve years ago, I found this forum. I...
  6. Replies
    37
    Views
    73,030

    Sticky: Re: Wegeners Granulomatosis / GPA specialists

    My new GPA doc. She’s a good listener and is maintaining my treatment regimen.

    Lynne Fussner, MD
    The Ohio State University Wexner Medical Center
    Department of Pulmonology
    (614)293-4925

    She...
  7. Re: It's Obinutuzumab or Bust! Second generation anti-CD20 monoclonal antibodies.

    Hope the new drug works well for you, Tom!
  8. Replies
    4
    Views
    5,931

    Re: New member with long history

    I’ll give you the news the doc who diagnosed me gave. The bad news: You have GPA (whatever the hell that is) and it’s not curable. The good news: It’s treatable, and since we diagnosed you early on...
  9. Replies
    1
    Views
    8,582

    Re: How do I delete a thread I posted?

    Send a pm to andrew?
  10. Replies
    2
    Views
    1,092

    Re: Newly diagnosed in Indiana

    CaraJ

    Welcome to the club no one wants to join. It seems your doc is using the “Fauci” protocol. It’s harsh, but it worked for me. I hope you won’t be on cytoxan too long. One of the longer term...
  11. Replies
    4
    Views
    1,712

    Re: More Rituximab Needed

    Chadwyck

    I don’t know for sure if GPA gave me CKD. Other than secondary indicators (creatinine and eGFR), no one had taken a direct look at my kidneys. When I fell in 2019, I had a thoracic CT...
  12. Replies
    4
    Views
    1,712

    Re: More Rituximab Needed

    I’m thinking a consult with nephrology is in order. I have stage III chronic kidney disease as a gift from GPA. Creatinine is consistently elevated and eGFR is consistently low. Like you, I feel fine.
  13. Replies
    3
    Views
    1,247

    Re: Aging and medications

    John S

    I also get two 500 mg infusions a year. This most recent is the first I’ve had at OSU since 2017. All of my infusions have been under Dr VillaForte’s protocol. (Dr Fussner followed the same...
  14. Replies
    3
    Views
    1,247

    Aging and medications

    I had rtx infusion #23(?) yesterday. Thirty minutes before the rtx was started, I got a dose of solu medrol, benadryl, and Tylenol. The infusion proceeded normally under the accelerated protocol. (It...
  15. Replies
    3
    Views
    1,203

    Re: Rituximab and the new Covid vaccine

    Talk to your wegs doctor, but I expect that you won’t get these vaccinations until sometime around Christmas. I was told to get my vaccinations at least a month before the infusion.
  16. Thread: RSV vaccine

    by Pete
    Replies
    4
    Views
    1,501

    Re: RSV vaccine

    Quick update…

    I saw my cardiologist last week. He minimized the concern about the change in the EKG. However, he did order an echo cardiogram which was inconclusive and a lipid panel which was not...
  17. Thread: RSV vaccine

    by Pete
    Replies
    4
    Views
    1,501

    Re: RSV vaccine

    John S

    I wanted to get my Covid shot no later than this week so I can get RTX sometime in November.
  18. Thread: RSV vaccine

    by Pete
    Replies
    4
    Views
    1,501

    RSV vaccine

    I got the RSV vaccine and high-dose fluzone vaccine last week. For the first time, I had a reaction to a flu vaccine — injection site discomfort. It was mild, and was gone the next day.

    I had a...
  19. Thread: New Member

    by Pete
    Replies
    3
    Views
    1,420

    Re: New Member

    Welcome to the “club” AmyG

    i’m glad to see you’ve found good docs. I also have eustachian tube dysfunction. Fortunately, it doesn’t bother me too much. Are the docs giving you anything for the...
  20. Replies
    7
    Views
    2,147

    Re: First Time On Rituximab!

    Chadwyck

    Other than staying hydrated, no medical prep is needed. The first infusion will last 4-5 hours. Immediately prior, you’ll get doses of steroid, benadryl, and Tylenol. This is to prevent...
  21. Thread: Avacopan

    by Pete
    Replies
    42
    Views
    39,685

    Re: Avacopan

    CapeKay

    If you’re having difficulty breathing and chest pain, call 911 and get to the hospital. Ambulances that arrive with patients with breathing difficulty and chest pain get higher priority. I...
  22. Thread: Avacopan

    by Pete
    Replies
    42
    Views
    39,685

    Re: Avacopan

    CapeKay

    When avacopan was first being touted as a treatment for GPA, I asked my rheumy at Cleveland Clinic about it. She said that since I was off pred and doing well with rituximab, I wouldn’t...
  23. Thread: Avacopan

    by Pete
    Replies
    42
    Views
    39,685

    Re: Avacopan

    CapeKay

    You may want to try a very slow pred taper. It took me nine months to go from 5 mg/day to zero. I got off pred in 2018, and haven’t gone back on it as maintenance therapy since. I’ve done...
  24. Replies
    2
    Views
    1,116

    Re: Saddle nose reconstruction surgery

    Hello VeraM,

    I have no experience with saddle nose deformity. I hope your husband gets effective treatment soon. You may want to look at the "Find a Doctor" page on the ...
  25. Thread: Newly Diagnosed

    by Pete
    Replies
    3
    Views
    1,720

    Re: Newly Diagnosed

    CapeKay

    You’ve had quite the fight with both vasculitis and your doctor. Here are a couple of thoughts:
    > While the trip to Cleveland Clinic is a good idea, there may be a better choice in Boston...
Results 1 to 25 of 500
Page 1 of 20 1 2 3 4