An interesting twist...

[annekat]

I have heard of people having more than one autoimmune condition, even as many as 3 or 4. I guess that would mean you could have two forms of vasculitis. I'm not as up on the technical data as some, though I've probably absorbed a lot through osmosis. If it turns out they are ruling out, WG/GPA, perhaps you should stick around in case they change their minds back again. People have done that and been considered honorary members for life, and anyone with another form of vasculitis would have a lot to contribute! Best of luck as they figure it out, and stay safe around Covid, our unwelcome vistior from outer space, it would seem.

[DStaelens]

So an update: Started to feel pretty good around the 8 week mark after the first Rituxan infusion. Feeling almost normal now and am tapering down on the prednisone quite a bit. Went to another specialist to get a third opinion on the diagnoses and what is going on. He confirmed that A) I do have GPA, and B) it hasn't entered my kidneys, I just happen to have another thing going on that luckily isn't so bad it's an issue but is something to keep an eye on.

With the ANCA/PR3 levels as high as they were/are, he also recommended maintenance infusions of Rituxan and continued tapering off the steroids. So not much of a plot twist, but still interesting I think if someone else runs into a similar scenario. The doctor at Capital District Vasculitis in Albany was phenomenal to speak to help gain an understanding of all the things happening. He easily spent an hour with me going into any details I needed.

The Rituxan infusions have been almost magical for me, I feel better than I have in over two years. Actually cleared to go do things I love doing again like diving!

Stay safe, and take care,
Dave

[vdub]

Very interesting twist. You are too new a member to remember "Jack". Jack was from the UK and was one helluva guy. He died from wegs around 2011 or 2012. Anyway, Jack often said, "just because you have one bad disease, doesn't mean you can't have another". And, he was so right. I think many of us have multiple diseases. Depending on how you count, I have somewhere between 3 and 6 -- some are dependent on or because of others, whereas, some are totally unrelated. All are no fun.