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Type: Posts; User: Dirty Don

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    Re: Need a referral

    Hi Michelle...again! Left your info on the other submission you sent...best to you! Or contact me thru messagings on here. Don
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    Re: New Member ~ Phoenix, Az

    Welcome Michelle...I'm chiming in as Pete suggested! LOL I go to Mayo Clinic in PHX & the clinic on Shea Blvd. & live in Surprise, so it's a bit of a drive but well worth it. Short story: I started...
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    Re: COVID 19 and Wegener's - musings

    Hated tuning the side draft dual carbs on the TRs, I feel your pain!!!!!! LOL Take care & enjoy!
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    Re: send good energy and prayers my way

    The infusion will go well. They take every precaution including snacks & drinks! The infusion goes slow so they can monitor your intake and reactions...they are prepared. This is the first of the 4...
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    Re: Diagnosed yesterday

    Hi again Jen, I was on MTX and pred. The MTX was for about 5 years, then off everything, flared again a year and half ago, now on Rituxin...so no guarantees as to the future. Nausea & severe lethargy...
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    Re: Coronavirus and GPA

    Last trip to Mayo was exactly the same: masks, temps, questions, directed and redirected, available sanitizers, it all went well & felt safe. Maybe better than usual! Oh, all the lines and checking...
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    Re: Diagnosed yesterday

    Welcome to the club...interesting initial symptoms. Sounds like after much trial and error, the docs have found you a good course to maintain for a while. Hope the MTX and reducing pred help you get...
  8. Re: shankxonline - My path to identify GPA and overcome it

    My last flare included scleritis in one eye. Pred cleared the scleritis up immediately with no effects, then went on to 3 infusions of RTX to down the flare. I used to take MTX after 1st flare. MTX...
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    Re: Hey new people!

    DOOM is great, even the newest version! Go get'em!
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    Re: Starting Methotrexate

    I started treatment with MTX and pred. MTX took approximately 4-6 weeks for full effects. Side effects were nausea, so doc had me take 2 half doses within 24 hours, it worked well. Best to you.
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    Re: To all of our Aussie Friends

    Could be a collector!!! LOL
  12. Re: EustachianTube Dysfunction: Balloon Dilation

    Welcome to the best experiential info on earth for GPA. So, I had E tube therapy on right ear. Mine is the reverse of yours, stuck open...due to first flare attack on sinuses and lungs. It didn't...
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    Re: Medical Cannabis

    Rational and pot don't always mix well! So, this is experientially subjective! THC is in all forms of pot, just reduced in its CBD state. CBDs are an anti-inflammatory and act as such with a mild...
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    Re: Recent Diagnosis

    Welcome Sajo...you picked the right place to ask, vent, and give back for Wegener's. Your symptoms are similar to some I had on my 2nd flare, the pain, tingling, etc. First attack was on lungs and...
  15. Re: Journey to being diagnosed, treated, and already first flare up

    Not sure how common, but sure looks familiar, just different aches and rashes for me, etc. Best to you, follow your regimen!
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    Re: Doc required in Idaho Falls

    There are 3 rheumy's who advertise Lupus on their interests in Spokane, WA, about 20 mis. from Idaho Falls...it's a stretch, but worth tracking.
  17. Re: shankxonline - My path to identify GPA and overcome it

    Glad you're on a good path now. Kinda surprised there aren't more vasculitis docs around Bay area. I'm at Mayo/PHX and they started me on the pred/MTX path. Took almost 2 years to wean the pred and 4...
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    Re: Methotrexate without Prednisone

    I started with pred and MTX, cut out pred after a while. Was on MTX only for about 4 years and achieved remission for nearly 8 yrs. Have relapsed in past year, taking RTX now, have had 3 infusions...
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    Re: Hello from Shawny

    Hi Shawny, good place to be with what you're going thru. Please ask any & all questions you have as there are years of experience on this blog. I have GAD (general anxiety) and take meds for it....
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    Re: 17 Year Old Daughter

    Sorry so young with this disease....BUT, you are at the right place for help. I use Mayo in PHX, and for 8 years they have taken extremely good care of me. Questions should range from how do we make...
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    Re: 20 year old son

    Another WG flare doesn't mean the symptoms will be the same. I had first flare with lungs and sinuses being the main targets...my 2nd flare attacked joints in legs & feet. Go figure! Headaches may be...
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    Re: Need a referral

    Sorry you're in confusion about how to treat WG. It's complex, you've got that right. Avoiding the drugs used to lessen WG effects, both long & short term probably isn't the wisest way to go. IF...
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    Re: ENT in the US who knows GPA well

    Dr. Devyani Lal, ENT at Mayo/Phx is excellent. She even showed me the inside of my sinuses as to where the disease did damage...in COLOR! What!? Anyway, she knows Wegs, and will do what one needs....
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    Rituxan is my new friend

    For those who knew, I had a collision this last summer which resulted in severe bursitis...which then transformed into a flare. First flare 8 years ago was sinuses & lungs, this one affected most of...
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    Re: Second Opinion

    As you should be a concerned mom...seems the doc is ignoring or not knowledgeable enough to recognize obvious concerns. You don't even know if the doc ordered the right tests. Don't know where you're...
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