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Vasculitis UK
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I just discovered this site, and I am astonished at how much of this could be something I had written!! The symptoms and all that people go through seem to be universal (sadly). Mine was predicated by a hospital stay (recurrent - weeks at a time) in 2014. Pneumonia was the diagnosis, ICU when went into a coma-type state, etc. It ended up that I have Asthma (came on at age 65!), was SO SICK for 6 months...could NOT get off of Prednisone! Then, everything abated - except (of course) Asthma and sinus issues. I ended up having sinus surgery, lasy summer (2016) at Mayo - had to be hospitalized & lost a lot of blood. Through their tests, Churgg was diagnosed. Since then, I (religiously) do my Symbicort and occasional sinus cleanses, and the vasculitis pops up, fairly frequently. I'll get a sudden blood spot - that grows - looks horrible (of course, in prominent spots!), etc. Now, my right shoulder & neck area are SOOO sore! I thought I'd slept on it wrong, but I'm guessing it's the Churgg (SOMEHOW), as it doesn't go away. This is an awful condition, as the prognosis is not good - for anyone. P.S. I feel that mine came about because for a year, I lived by a freeway in Minneapolis - it all started right after I left - the oil fumes soot from the trucks that went by made our mountains of snow black! Scary - so I left as soon as I started getting sick. But the damage was done. Hang in there, all....

2 Replies


Are you been on any treatment for the Churg Strauss ( EGPA ) apart from inhalers to treat the asthma?

I am concerned that you think the prognosis isn't good for anyone as this isn't true. ANCA associated Vasculitis used to be universally fatal before the advent of prednisolone but that isn't the case now. EGPA is a rare Vasculitis variant ( there are over 18 different types ) and can be challenging to treat, the most important thing is to find a Consultant that understands it and has experience in treating it.

1 like

Hi, I agree with Keyes. I've had Churg Strauss for 12 years and never flared. I was on a heavy dose of prednisone [starting at 100 mg!] for over 2 years, very gradually reducing. I was started on cell cept [mycophenelate] 3 months after the first flare. I've been off prednisolone for 10 years. Yes, I get symptoms of associated problems such as aches, swelling, fatigue, and fibro myalgia type pain, but life can be good again. I also started with symptoms very much like yours, sudden worsening of asthma and pneumonia. So please get to a rheumatologist so you can get medication other than asthma control. Best wishes.


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