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Type: Posts; User: Dirty Don

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    Re: Sinus issues - what to expect?

    GPA attacked my sinuses and lungs...surely was 'wild' to watch the GPA spots as the ENT merrily pointed them out to me...in color no less. Not a painful exercise, but irritating and eye opening. If...
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    Re: Bad Smell and taste During GPA

    Nothing is normal with GPA first of all. My sinuses thus taste are wiped out. Pred could cause that, does wonders for the appetite! My ENT not only took a hand held scope, but rammed a TV tube up...
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    Re: Ongoing GPA symptoms with negative labs

    Many years ago, Jack intimated that just because we have GPA doesn't mean we can't get something else. Jack is/was a pioneer on here. I'm with Pete, get to a major clinic that can/likes to deal with...
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    Re: Third Vaccine

    I've had first 2 shots, Mayo suggested I wait on the 3rd. Feel fine, no problems, will listen to docs.
  5. Re: Bloods Negative, doctor doesnít want to do nasal biopsy.

    "said if itís GPA, itíll show itís ugly head one day." - Are you kidding me? Not a doc I'd trust...let's wait for the flood to hit before we evacuate...what? NO, find a doc who does what supposed to...
  6. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    There is a lesser chance of producing the amount of antibodies needed. According to Mayo docs, the estimate of effectiveness is about 80-85% compared to a normal situation. I've had both shots, no...
  7. Re: Need a good Wegeners rheumatologist in Phoenix.

    Understood...keep at it, you'll get what you need...best to you.
  8. Re: Need a good Wegeners rheumatologist in Phoenix.

    If VA won't go to Mayo, then call Mayo rheumatology, tell them your situation, ask for recommendations outside Mayo. And, ask Mayo if they play well with VA...may go just one way for them. INSIST on...
  9. Re: Need a good Wegeners rheumatologist in Phoenix.

    Hi Birdie, I'm a golfer here in PHX, thought Pete was offering me a birdie! LOL Seriously, I have been at Mayo PHX for 10 years. The docs are in Rheumatology: Dr. Lester Mertz, MD (head of Rheumy...
  10. Thread: Cryotherapy

    by Dirty Don
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    Re: Cryotherapy

    Hmmm, wandering around looking for things....nope, didn't find cryotherapy...part of having WG is looking for things that aren't there...we want to feel better, we don't, we try...stick to the docs...
  11. Thread: Lab values

    by Dirty Don
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    Re: Lab values

    My creatinine is in that range, almost always...Mayo doesn't think enough of it, considering other issues, to go after it right now...they'd rather wait and see. Not just a safety issue with Covid,...
  12. Thread: Lab values

    by Dirty Don
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    Re: Lab values

    My numbers haven't been terribly consistent over the years, but my docs aren't numbers chasers. With RTX in your system already & no other side effects/symptoms, another consultation or ride it out...
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    Re: Autoimmune Disease Awareness Month

    I get notices from an AI awareness group, have no idea who they are, but something I 'looked' at once. No effects, something to think about once in a while.:cool1:
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    Re: UTI and antibiotics after RTX infusion

    I've had many antibiotics with dental work. Have never affected either of the drugs in use for me. One could think one might help the other...it's been suggested. Best to you.
  15. Re: New User with no diagnosis. Looking for advice.

    I would add to me2: start calling Mayo now for an appt., should be with rheumatology, as it may take some time to get in. My 1st appt with them took 2 weeks of phone calls every day to get an appt...
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    Re: Coronavirus and GPA

    Mayo rheumatology in PHX told me it will be fine for me. 1 doc even suggested it could help with inflammation...we'll see. I'm waiting...tell me when you get it!! LOL
  17. Re: New User with no diagnosis. Looking for advice.

    I agree with me2. I had a lung section taken and it was terribly accurate! At a time when docs treating me had absolutely no idea what was going on, I was scared and even became resigned, all very...
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    Re: New Member diagnosed in 2017

    Welcome Nova, glad you found us meandering thru our disease together. Great place for anecdotal and some factual ideas as you progress. Please ask any & all questions you may have. Your trip thus far...
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    Re: Infections from mosquito bites

    Move...oops...
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    Re: New Member from Indiana

    Hi, don't be nervous over the infusion...seriously, other than the time involved, it's a nice afternoon in a chair...just boring. Docs give you a little 'highball' of pred and some other things...
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    Re: New Member from Indiana

    Welcome to the club Christine! It's OK to be scared, the questions will keep coming...keep asking, and the fight in you will create expectations that may not be answered immediately. In that light,...
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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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