191

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

22 comments fedilink hide all child comments

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.

you are viewing a single comment's thread
view the rest of the comments

[-] 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.

this post was submitted on 16 Sep 2024

191 points (98.5% liked)

Ask Lemmy

27027 readers

936 users here now

A Fediverse community for open-ended, thought provoking questions

Please don't post about US Politics. If you need to do this, try !politicaldiscussion@lemmy.world

Rules: (interactive)

1) Be nice and; have fun

Doxxing, trolling, sealioning, racism, and toxicity are not welcomed in AskLemmy. Remember what your mother said: if you can't say something nice, don't say anything at all. In addition, the site-wide Lemmy.world terms of service also apply here. Please familiarize yourself with them

2) All posts must end with a '?'

This is sort of like Jeopardy. Please phrase all post titles in the form of a proper question ending with ?

3) No spam

Please do not flood the community with nonsense. Actual suspected spammers will be banned on site. No astroturfing.

4) NSFW is okay, within reason

Just remember to tag posts with either a content warning or a [NSFW] tag. Overtly sexual posts are not allowed, please direct them to either !asklemmyafterdark@lemmy.world or !asklemmynsfw@lemmynsfw.com. NSFW comments should be restricted to posts tagged [NSFW].

5) This is not a support community.

It is not a place for 'how do I?', type questions. If you have any questions regarding the site itself or would like to report a community, please direct them to Lemmy.world Support or email info@lemmy.world. For other questions check our partnered communities list, or use the search function.

Reminder: The terms of service apply here too.