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Type: Posts; User: Dirty Don

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    Re: Help for echoing in ear?

    Kind of an echo here. I have an open Eustachian tube, damage done early by GPA. Mayo tried an experimental approach, didn't work....seems nothing will. I've learned to live with it and recognize it...
  2. Re: Rituxan treatment for early stages Upper Respiratory

    Methotrexate & prednisone...really did help but took about 4-6 weeks to become truly effective - nothing in respect to serious side effects altho some can't tolerate MTX. 2nd flare was caught early...
  3. Re: Rituxan treatment for early stages Upper Respiratory

    My experience with Mayo, Dr. Mertz, was to knock the AI system down immediately with RTX. Then, when flares occur he is hesitant to keep using RTX, saving it for more serious flares later. It has...
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    Re: New Member ~ Phoenix, Az

    Dr. Mertz is the best...always errs on the side of what's right for me at the time. I'm still with him and rheumatology at Mayo. It's kind of a 2nd home for me! Had 2 RTX shots, but he doesn't like...
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    Re: Swelling In Ankles & Feet

    Yes, but GPA does not exclude other problems either...make sure with experienced docs. I had roaming pain, but rarely swelling. Best to you.
  6. Thread: Evusheld

    by Dirty Don
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    Re: Evusheld

    Hang tough my friend, another bump, you'll get past this one too.
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    Re: Bronchial Tube Stenosis!

    Don't know what you dialed in, but it's so characteristic of 'us' to look good, feel well, then collapse. Just finished a simultaneous attack of GPA, Valley Fever, and Covid. Did NOT test positive...
  8. Re: Rituximab Might Be Only Immunosuppressive Raising Mortality Risk in COVID-19

    Just got mine as Mayo had 400 doses, and I was chosen randomly! Off to Vegas! A bit of tiredness afterwards, slept well that nite, felt well next day. Not a big thing! Administrating nurse said...
  9. Thread: Evusheld

    by Dirty Don
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    Re: Evusheld

    Got my Evusheld shot yesterday. Was randomly selected as Mayo has only 400 shots of it. Should head to Vegas next I guess. Felt fine during the rest time afterwards, but by time I got home I was very...
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    Re: Let's talk about "limited" Wegeners...

    "Limited' is not in reference to the degree of the disease. Rather it refers to the more specific areas of infection. In that sense it is 'limited' and not through out the body. Mayo doc described it...
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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.
  15. Re: Bloods Negative, doctor doesn’t want to do nasal biopsy.

    "said if it’s GPA, it’ll show it’s 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...
  16. 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...
  17. Re: Need a good Wegeners rheumatologist in Phoenix.

    Understood...keep at it, you'll get what you need...best to you.
  18. 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...
  19. 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...
  20. 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...
  21. 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,...
  22. 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.
  25. 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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