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Does anyone else here have lupus? Just got diagnosed and I am really scared/upset (lemmy.world)

submitted 2 months ago by LaunchesKayaks@lemmy.world to c/asklemmy@lemmy.world

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I got a diagnosis today after trying to figure out what's wrong with me for twenty years. My grandmother died at a relatively young age of lupus complications and she had to end her whole career at 36 because she was so sick. I'm 27, and I am terrified I'm going to end up like her. Her quality of life was absolutely awful for the entire time I knew her. I don't want that for myself.

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[-] LaunchesKayaks@lemmy.world 16 points 2 months ago

My doctor has given me all sorts of info on it. I was looking for more first hand account kinds of things.

[-] snausagesinablanket@lemmy.world 10 points 2 months ago* (last edited 2 months ago)

I have a friend whos wife has had it for decades. She takes Hydroxychloroquine and has almost no symptoms except unwanted weight loss. I helped her get some Cannabis gummies and now she maintains a good average weight and she was able to keep her job. Its better to know you have and and take it on then to wonder what's the matter.

[-] LaunchesKayaks@lemmy.world 8 points 2 months ago

I was put on hydroxychloroquine a few months ago and it's great, but having a formal diagnosis now is making it scary.

[-] roofuskit@lemmy.world 6 points 2 months ago

I've been on hydroxochloroquine for over a decade. Other than having to increase the frequency of opthalmologist appointments the longer I'm on it, it's done nothing but improve my life.

[-] Boozilla@lemmy.world 7 points 2 months ago

Sorry for the misunderstanding.

[-] LaunchesKayaks@lemmy.world 9 points 2 months ago

You're good. I appreciate the advice. :)

this post was submitted on 16 Sep 2024

191 points (98.5% liked)

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