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Marta we joined the same month and got diagnosed a couple months earlier. We both remember jack fondly and his encouragement and many helpful posts.We are lucky that we are still here 12 years later...

i got the Evusheld injection yesterday at a clinic in next state where i get a lot of my health care. My local clinic did not have the drug available and our state has a more complicated procedure...

How much hassle was it to get Evusheld? How long did it take to get approved to get it?

Thanks for this info. It is reassuring and helpful in dealing with these complex questions about our treatment and management of GPA.

My doctors have said it should be safe. The other question I had was if it would be effective for me if I was taking Avacopan and Azatioprine to control my GPA? But that risk has little downside so...

Does Evusheld have any risk of causing a flare of GPA like the vaccinations did for me? I don't dare get any boosters since the first two vaccinations seemed to cause a serious flare of my GPA that...

I believe in the past "limited" was usually applied to GPA where there was no major organ involvement. The lungs would certainly have been a major organ.

I think some experts like the wording of involvement instead of localized since involvement seems broader and leaves more room for acknowledging the disease might be or become active in other areas...

I have seen references to a diagnosis of GPA with involvement of (list specific areas) eg lungs, kidneys, sinuses, etc.

I think this a much better diagnosis as it gives more useful information...

i have been on Avacopan (Tavneos) over three months and might be having trouble with side effects. I spent the afternoon in our ER thinking I had a infection of my BAHA site and bladder infection. ...

I also joined in 2010 when i was in a nursing home working on recovery after months of treatment in hospitals after I was finally diagnosed with Wegeners Granulomatosis before it became more...

Local doctors were the ones who surmised i was having a flare of GPA when i saw them for initial symptoms of the flare. They told me several other people had also experienced a relapse in other...

I had been vaccinated with two doses before I got my RTX treatment and did develop antibodies from the vaccination. But my doctor says there is not point in getting a booster shot now since i would...

i have been on the Tavneos for three weeks. It does cause some upset stomach and diarrhea so far but often such initial symptoms decrease as the body adjusts to the new meds. it can cause elevation...

You can have residual effects of GPA even when doctors consider you in a drug induced remission. My doctors defined remission as an tolerable adjustment that did not warrant any new additional...

Do any of these have a risk of causing a flare of GPA?

After several more phone calls and discussion the company changed their position and said it does not matter if the drug gets frozen and that it should be OK to take. It just seems strange though...

Have you considered getting a Uro-lift to help with retention?

I was approved to get the Tavneos (avacopan)drug free for a year but have not been able to start it. The bottle says the med should be stored at 68 to 77 but excursions from 59 to 86 are permitted....

There are new meds to treat Omicron but they will be in short supply. There are efforts increase production of these drugs as they rush to make them available as they will be critical for us elderly...

I also have a sulfa allergy so they give me the half of Bactrim that is not sulfa Trimethoprim and Pentamadine inhalant treatment every 4 weeks. I think the term limited or mild is intended to...

I read some studies suggest it might not help much with Omicron version which is now the dominant source of infections. It may not be as deadly or severe but when it results in a massive increase in...

Most people only get RTX once or twice a year so it would cost $40000 year. Tavenos for $17000 is probably for a month or $204000 year or best cases if it is 90 day supply, probably unlikely since...

Is anyone on this drug? It has been approved for me to try but is very expensive even with my insurance coverage for most of the cost but there apparently is a program to help us retired people on...

My Moderna vaccinations early this year caused my first serious flare in 10 years. The treatment of high dosage of prednisone and RTX and GPA flare caused a lot of damage to my body. I am reluctant...