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  1. Re: New Patient appointment at Cleveland Clinic

    Too bad your doc’s office is inept. That said, you’ll be well treated at Cleveland. If you can make notes of your history with wegs before your appointment — symptoms, treatments, outcomes, recent...
  2. Re: New Patient appointment at Cleveland Clinic

    If your health insurance will allow it, maybe you should self-refer. Thatís what I did.
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    Re: In process of being diagnosed

    Lea

    The good news: You have a good chance of getting back to pre-wegs condition. The less than good news: It may take awhile.

    If your doc starts you on methotrexate, you should notice...
  4. Thread: Your Thoughts

    by Pete
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    Re: Your Thoughts

    IMHO (Iím not a doctor), you still have disease activity. If youíre feeling worse after each pred reduction, youíre either tapering too fast or not getting proper treatment. You might want to talk...
  5. Thread: Your Thoughts

    by Pete
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    Re: Your Thoughts

    Here are a few thoughts...

    1. Are your labs showing signs of disease activity? What is your sedimentation rate? What is your C-reactive protein? Are other tests within normal limits?
    2. Armed...
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    Re: In process of diagnosis

    @MINDYB77

    Vasculitis is often difficult to diagnose. I was diagnosed more by a process of elimination. The pulmy leading the team of docs who was treating me tentatively concluded I have GPA. They...
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    Re: Glad to be diagnosed

    Geoff

    Hey Stranger!! Glad to hear all is well with you!!
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    Re: Imuran Side Effects

    @Mattieus

    Did you get a TMPT test before starting immuran? This test checks to see if your liver can metabolize immuran. I didn’t get the test, and the drug made me very sick (GPA flare plus...
  9. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Middlesista

    I had my 19th rtx infusion today. We moved it up a few weeks (usually do it in late October) because I had a small flare last month (clobbered it with a week each of 20,15,10,5 mg)...
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    Re: Got a cold, should we go to doctor?

    Try over the counter cold medications for a few days. If his symptoms don’t change or get worse, a call to your doctor is in order. My childhood family doctor said of colds, “If you treat a cold, it...
  11. Thread: Hello from Shawny

    by Pete
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    Re: Hello from Shawny

    Shawny

    At disease onset, you may get very high doses of pred. I started at 60 mg. I think there are people on here who have been as high as 80.

    Just a word of caution. Don't taper too fast....
  12. Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    shankxonline

    Welcome aboard!! I hope you can get great treatment leading to a full recovery. I’m 8 years in and back to a nearly normal lifestyle — making a few accommodations for being 73 yo.
    ...
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    Re: Happy Birthdays Thread

    Would that make you a Re-Pete?? Happy birthday ó and many more!!
  14. Thread: Transplant

    by Pete
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    Re: Transplant

    gilders

    Great news, Pete!!
  15. Thread: Lena's story

    by Pete
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    Re: Lena's story

    lenasavage

    Love the sense of humor. It will be most welcome's here -- as you are. I hope me2's advice about sinus rinses helps. The image of using a plumber's snake to clear it out is best left...
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    Re: Prednisone Reduction

    Masha

    Cathy is on the mend. Her liver enzymes are getting close to normal. Sheís feeling better every day and getting her energy back.

    My flare has been pretty minimal. Pred is clearing up the...
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    Re: Prednisone Reduction

    We sold our house and bought a smaller condo in May. We moved in late June. Cathy went into the hospital on July 3, and was diagnosed with autoimmune hepatitis ten days later. Sheís recovering ok. It...
  18. Thread: Transplant

    by Pete
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    Re: Transplant

    gilders

    Great news, Pete. Hoping the progress continues.
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    Re: Prednisone Reduction

    It’s post #1 in this thread.

    https://www.wegeners-granulomatosis.com/forum/threads/5835-Pred-Taper-Completed?highlight=Prednisone+taper+Pete

    Currently taking 15 mg to see if I can get a flare...
  20. Thread: My GPA story

    by Pete
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    Re: My GPA story

    Hi @Rosie,

    Welcome to the Forum.

    You didnít mention when you had your latest rituximab. If itís been recently, you may be reacting to the drug cocktail that goes with it ó a large dose of...
  21. Thread: Flare?

    by Pete
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    Re: Flare?

    Sounds like a flare to me. Hope you can see your wegs docs soon.
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    Biosimilar for rituximab

    Competition for rtx...
    ...
  23. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi Kim,

    I guess we should congratulate you for surviving 41 years with wegs. Amazing!

    You probably wonít have any reaction to rituximab. I have allergies to horses as well as hay fever. Since I...
  24. Thread: Newly Diagnosed

    by Pete
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    Re: Newly Diagnosed

    Itís prophylaxis for PCP pneumonia to which immunosuppressed people are more susceptible.
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    Re: New here, being diagnosed

    Hi Wegwife

    It sounds like he may indeed have wegs. That said, he should be treated by a doc with solid wegs expertise. You may want to ask how many wegs cases they see in a year. If itís a small...
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