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  1. Replies
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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...
  3. 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...
  5. 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...
  6. 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...
    ...
  8. 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...
  9. 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...
  11. Thread: Transplant

    by Pete
    Replies
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    22,865

    Re: Transplant

    Oh snap!! Címon kidney!! Do your thing!!
  12. Thread: Strict Dieting

    by Pete
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    Re: Strict Dieting

    John S

    Absolutely hilarious!! Hope youíre doing well otherwise!!
  13. Thread: odd symptoms?

    by Pete
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    Re: odd symptoms?

    @Mags

    Perhaps your husband is also suffering from hyponatremia?

    https://www.webmd.com/a-to-z-guides/what-is-hyponatremia

    As our departed friend Jack once said, “Just because you have wegs...
  14. Re: My Rhumy and I started me on High doses of THC and CBD oil

    Jaha

    Unfortunately, vasculitis and neuropathy are not eligible for medical marijuana in Ohio... The cave dwellers in Columbus...
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    Re: Son, 20 GPA diagnosed 2 weeks ago

    helenamt61

    Iím saddened to learn the disease has hit your son so hard. Itís going to be a long, hard slog to recovery. I hope he does well with proper treatment.

    Here are a few thoughts for...
  16. Thread: Need a referral

    by Pete
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    Re: Need a referral

    I see Dr Alexandra Villa Forte at Cleveland Clinic. In the nearly seven years sheís treated me, Iíve been on methotrexate and rituximab. Current meds are an annual dose of rituximab and bactrim 3x...
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    Re: Ear issues - experiences

    It seems that some meds can cause tinnitus. If this dumb disease doesn’t get you one way, it’ll find another...

    https://health.clevelandclinic.org/tinnitus-5-strange-reasons-for-ringing-ears/
  18. Thread: Transplant

    by Pete
    Replies
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    22,865

    Re: Transplant

    I’ve noticed the same thing. Last year, my heart catheterization was delayed for several hours because my creatinine was too high. It took awhile to hydrate me to the point where my creatinine...
  19. Thread: Mags

    by Pete
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    Re: Mags

    I donít know if this is worthwhile, but itís from a good source and germain to this thread...
    ...
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    Re: Your personal experiences in treatment?

    Eileen ann

    It looks like your daughterís meds are pretty standard. I started at 60 mg of pred daily, but dosage may be related to weight (I forget). When the dosage gets below 10 mg, the taper may...
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    Re: Your personal experiences in treatment?

    Eileen ann

    Sorry to learn your daughter is afflicted with this disease. A couple questions: What was her original dose of prednisone? How much is she taking now? How much MTX is she taking?
    ...
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    Re: Rituxan maintenance dose

    Fortunately, my insurance (and Medicare) have never refused to cover treatment for GPA. Sad that you have to deal with this...
  23. Thread: Went to duke

    by Pete
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    Re: Went to duke

    Masha

    Glad to hear you found a great doc. Looking forward to more posts about continuous improvement!!!
  24. Thread: Transplant

    by Pete
    Replies
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    22,865

    Re: Transplant

    gilders

    Iím glad to see the good news keeps on coming!!!
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    Re: Your personal experiences in treatment?

    cawcawcaw

    The good news is that I found an excellent wegs doc about 18 months in. She got me into a long-term remission, so retirement has become pretty much what I hoped it would be. Iím involved...
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