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Sudden low blood oxygen levels: Anyone else have Vasculitis?

Blood Cancers & Disorders | Last Active: Feb 21 8:18pm | Replies (29)
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@molly48823

@SusanEllen66 and @siosal - http://www.VasculitisFoundation.org has lots of information about vasculitis. Ask your healthcare provider to include a test for ANCA in your next lab work order. Hopefully, your doctors will know where to go from a positive test result.. This is a rare disease so finding a knowledgeable healthcare provider can be a challenge. The Vasculitis Foundation is prepared to help you with that task. I was diagnosed with MPA vasculitis with critical kidney involvement 6 1/2 years ago. Now in remission thanks to good doctors and toxic drugs. Hope the same for you!

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Replies to "@SusanEllen66 and @siosal - www.VasculitisFoundation.org has lots of information about vasculitis. Ask your healthcare provider to..."
siosal | @siosal | Feb 18, 2022

Hi
I am getting excellent care in Boston.
And have done well so far. Yes….drugs are keeping a lot of us alive and healthiest possible.
Sounds as though we are doing well.

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SusanEllen66 | @SusanEllen66 | Feb 19, 2022

Thanks Molly, I joined The Foundation in 2016 when I was first diagnosed with cutaneous Polyarteritis Nodosa.
CPAN is extremely rare. I was treated by my dermatologist who had me on prednisone for almost 8 months.
I went into remission until this year. Now the CPAN has changed to PAN which is also rare.
Just like almost everyone else who has a rare disease I’ve been frustrated by the medical community’s lack of awareness regarding Polyarteritis Nodosa.
I would like to meet up with someone else who has CPAN or PAN. So far I have not.

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