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Masha

It sounds like you’re in pretty good shape for the shape you’re in. I hope you continue to improve.

Welcome back @greenjeep!

Getting Covid under control with vaccines that don’t trigger wegs flares will be a great blessing. Fortunately for me, the Pfizer vaccine has produced nothing beyond...

Hi Arlene,

I’m sorry that you’ve had such a bad time over the past months.

While it seems your preferred doc is compassionate, what about experience treating GPA? When I was diagnosed, the doc...

Roaming joint pain was an indicator of an impending flare for me when I was tapering off pred too quickly. I did manage to get off pred and still keep the disease under control. It took nine months...

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 attack).

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 relieve tinnitus.

Hearing aids have been a...

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 flare since 6/21. I have nearly lived in isolation....

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 its own. Some other issue may arise, and that could...

Hi Arlene!

Welcome to the forum. I’m sad that you’ve had such a time getting diagnosed, but GPA is often difficult to diagnose because so few doctors think to look for it. I hope the rituximab...

For me, the hassle was minimal. I called my PCP’s office on Thursday, had an online consult with infectious diseases on Friday, and got the shots on Tuesday.

The explanation I was given for how Evusheld works follows. It prevents the spike proteins in the Covid virus from attaching to other cells, thereby facilitating the elimination of the virus from the...

Good one!!!😂😂😂

I believe some doctors are using the term “mild”. I don’t know if that addresses the issue. (I think not.)

I have also been a forum member for 10 years (barely).It's been a godsend to me in that it helped me find Dr VillaForte and get answers to so many questions.

As luck would have it, a good friend...

Middlesista

I asked Dr Villa Forte at Cleveland Clinic the same question. Short answer is that evusheld does not deplete rtx antibodies, but complements them.

Try this one:

https://www.tripadvisor.com/Restaurant_Review-g50207-d396646-Reviews-Angelos_Nido_Italia_Restaurant-Cleveland_Ohio.html

My wife and I ate here a few years ago after rtx. Nice, old...

When I had my last visit with Dr VillaForte, I asked what I could do to reduce the neuropathy in my feet. It had gotten to the point where I was only walking every 2-3 days because my feet were so...

MegD

I hope your hubby is improving quickly. I’m 75 and 11 years in with GPA. I’m pretty healthy now and lead a pretty normal life for a guy my age. (Golf season is almost here.)

A couple...

I had two 500 mg rtx after my Covid shots a year ago. I had an antibody test in December that did not detect any Covid antibodies. Got a booster right after the test. Had another antibody test last...

I got Evusheld yesterday. The doc said I should develop some immunity almost immediately. Also said I’ll need another dose in about six months. As for the shots themselves, it was a nonevent— no...

jrslim

While you’re on cytoxan, be sure to stay hydrated and urinate whenever you feel the urge. The metabolites of cytoxan are hard on the bladder. A longer-term side effect is bladder cancer. ...

I was fortunate (and politely persistent enough) to receive Evusheld today. My PCP’s office connected me to an infectious disease specialist who listened to my story of three vaccinations, two rtx...

Ohio State just notified me that I am eligible to receive Evusheld. I’m waiting to hear from the pharmacy about the when and where. Hope it’s soon…

Well, I guess rtx works really well for me, but at the cost of immunity to Covid. I had a Covid antibody test today and have no detectable antibodies. I got the first two doses of Pfizer last...

I just had a note from Dr VillaForte. I’m a candidate for evusheld. The trick is getting it. There aren’t many doses available.