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Due to the large amount of spam signups from GMAIL addresses I have had to ban all GMAIL addresses.
NEW MEMBERS:
If you are signing up with a GMAIL address then you will need to use a different email address that isn't GMAIL. Please
contact me
if a GMAIL address is all you have.
CURRENT MEMBERS:
Nothing changes. If you previously signed up with a GMAIL address then you're all good. This only relates to new signups.
Welcome to the Wegeners Granulomatosis/GPA Disease Support Forums. We hope you find lots of valuable information here. There is information, support and friendly chat here for sufferers, their family and friends. We hope you sign up and become part of this very supportive group of people.
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Older Activity
07-02-2022,
11:24 PM
Pete
replied to a thread
Hearing Issues
in
General WG Chat
MaxD I forgot to mention that my hearing aids have no impact on patulous ear. I have the issue only in my right ear (where wegs made its first...
see more
3 replies | 44 view(s)
07-02-2022,
02:48 PM
MaxD
replied to a thread
Hearing Issues
in
General WG Chat
Pete thanks. Yes, hearing aids do have their down sides, but I wonder if they amplify the problem with patulous ears. When my eustachian tubes...
see more
3 replies | 44 view(s)
07-02-2022,
09:55 AM
Pete
replied to a thread
Hearing Issues
in
General WG Chat
Hi MaxD, I had tinnitus for years before wegs hit. Wegs did contribute to additional hearing loss. My ENT says there’s little that can be done to...
see more
3 replies | 44 view(s)
07-02-2022,
05:57 AM
MaxD
started a thread
Hearing Issues
in
General WG Chat
Among the lasting side-effects of GPA, I suffer from tinnitus and a dysfunctional eustachian tube (patulous ear). Sometimes the tube remains mostly...
see more
3 replies | 44 view(s)
06-30-2022,
01:48 AM
MaxD
replied to a thread
Evusheld
in
Medication
I was just informed by my rheumatologist's office that Evusheld was approved for emergency use ONCE ONLY. Hopefully this will be extended by the...
see more
10 replies | 420 view(s)
06-28-2022,
06:38 PM
gunnyl
replied to a thread
Evusheld and Ritmuxin
in
General WG Chat
Update I got the Evusheld injections in conjunction with my infusion a couple weeks ago. It was a really rough infusion cycle and took me longer...
see more
8 replies | 259 view(s)
06-25-2022,
03:02 AM
KathyTPA
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Thanks Pete & Masha! I am 61, got diagnosed 2 days after my 60th birthday. I walk outside in the mornings. in hillsborough county covid cases...
see more
18 replies | 383 view(s)
06-21-2022,
12:08 PM
Masha
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Hi Kathy, This has been a difficult time for all of us. Try not to think of yourself as fearful, just cautious. I am 72 and my husband is 79. My...
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18 replies | 383 view(s)
06-21-2022,
11:52 AM
Pete
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Quote: I am curious about "I lead a lifestyle very similar to my pre-GPA life" ... Maybe it is due to covid and I am newly diagnosed 12/11/20, no...
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18 replies | 383 view(s)
06-21-2022,
04:00 AM
KathyTPA
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Thanks everyone for all your words of wisdom, strength, truth and experience. on weight issues - while I was very sick prior to predninsone, I...
see more
18 replies | 383 view(s)
06-18-2022,
12:45 AM
dolfinette
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Hi
[email protected]
$ON! Sorry I can't answer your question since I'm still not in remission after almost a year so I'm not even sure what a flare up is LOL!...
see more
18 replies | 383 view(s)
06-17-2022,
09:36 PM
[email protected]
$0N
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
How often do flare ups happen after remission and does that cause the need for the return of Rituxan?
see more
18 replies | 383 view(s)
06-11-2022,
11:55 PM
gilders
replied to a thread
Forum activity
in
Website Issues, Feedback and Announcements
2013 for me, although I've been living with Wegener's much longer. I do go through periods where I tend to pop in to the forum much less. These...
see more
6 replies | 311 view(s)
06-07-2022,
11:23 PM
dolfinette
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
I've already faxed 30 pages of tests, notes, etc. to my new doctor and have hard copies ready to bring LOL! Now it's just a matter of being patient...
see more
18 replies | 383 view(s)
06-07-2022,
11:01 AM
marta
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
That's so awesome that you've moved it ahead. Yay! Don't listen to me on detail stuff because all of us are a little different, and I'm a bit of a...
see more
18 replies | 383 view(s)
06-07-2022,
07:10 AM
dolfinette
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Wow, you have such fabulous positive energy, Marta! I'm SO happy that you've been in remission since 2019 too! I'll definitely take note of...
see more
18 replies | 383 view(s)
06-07-2022,
06:48 AM
marta
replied to a thread
Forum activity
in
Website Issues, Feedback and Announcements
Me too. 2010. This feels like the old rat pack on here. My Wegener's Boot Camp. Man we spent a lot of time together, didn't we? We shared...
see more
6 replies | 311 view(s)
06-07-2022,
06:25 AM
marta
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Awww, thank you! I'm glad anything I said helps. I really do ramble on though, ha ha Without a doubt in my mind, I can say that the people on this...
see more
18 replies | 383 view(s)
06-07-2022,
05:07 AM
dolfinette
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Wow thank you Marta for all of this wonderful information!!! You've told me WAY more than my doctor!!! I do my best to stay away from germs and...
see more
18 replies | 383 view(s)
06-07-2022,
04:53 AM
dolfinette
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Thank you Christin! Your input definitely helps! :) I sure hope I get into remission soon so that I can get back to a semi-normal sleep pattern...
see more
18 replies | 383 view(s)
06-07-2022,
02:55 AM
marta
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Hey Arlene, I'm gonna give this a crack too. Everything Pete said is gold, I'm gonna add my own spin to it, as this thing hits us all differently,...
see more
18 replies | 383 view(s)
06-07-2022,
02:08 AM
[email protected]
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
I recognize the weightloss that you mention. Prior to my diagnose of GPA I also lost weight. After proper treatment my bodyweight became 'normal'...
see more
18 replies | 383 view(s)
06-06-2022,
09:47 PM
dolfinette
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Thank you, John!!! I'll definitely look into that sinus rinse you and Pete mentioned! :) I'm so glad neither of you experienced the unexplained...
see more
18 replies | 383 view(s)
06-06-2022,
09:35 PM
John S
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Yes, a daily nasal rinse has been very helpful for me. Even then, problems persisted till an ENT did sinus surgery. I have not had any issues with...
see more
18 replies | 383 view(s)
06-06-2022,
09:24 PM
dolfinette
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Thanks SO much for all of your input, Pete! It really helps a lot to hear someone else's experience and I'm incredibly happy that you're doing so...
see more
18 replies | 383 view(s)
06-06-2022,
09:18 AM
Pete
replied to a thread
Some questions my doctor hasn't answered (well a lot of questions LOL)
in
General WG Chat
Hi Arlene, I’ll take a shot at a few of your questions. 1. Given where you are with the disease, it probably won't become life threatening on...
see more
18 replies | 383 view(s)
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