u/Weak-Bake-5571

▲ 10 r/lupus

Urticarial vasculitis people- how long have you had flares? How many years am I looking at here?

I am a solid year past my big, nasty ass flare of cutaneous lupus that then lead to urticarial vasculitis all over my everything (AKA legs, then torso). And I have had flares, tiny and big, off and on since then.

I love a good medical journal- especially a review article that can give me percentages. Here the only percent I can find: 40% of people will no longer have symptoms within the first year. Cool, thanks for nothing with that piece of info- how about the 60% (the majority of us) who continue to have symptoms beyond a year? What does that look like for us?? For-ev-er…? 5 years? 7-10 years? And if the answer is: suck it up buttercup, the future is unknown and no one can give you an answer! That’s fine. That the real answer, I know that. I’m just curious what other people have experienced.

Also- I am one of the “not as common” with lupus but also with normal complements - so normocomplementemic urticarial vasculitis (NUV) with lupus. For just over a year. And flared up the last few days and making me sad about it.

How long have you had UV flares?

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u/Weak-Bake-5571 — 1 day ago
▲ 24 r/lupus

Sun protection - got my sun balaclava!!

Here’s my get up to go to the bank and then the dog park yesterday- I did pull down face part in the bank and anytime I was in the shade (I didn’t want to look like I was robbing the place!).

u/Weak-Bake-5571 — 2 months ago