Ask Lemmy
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.
Partnered Communities:
Logo design credit goes to: tubbadu
view the rest of the comments
Sorry to hear this.
An internet forum like Lemmy is not the best place for medical advice. Most diseases can vary significantly from person to person. Lupus comes in multiple forms. The musician Seal has a form of lupus, and he's 61. Autoimmune disorders are very complicated, because the immune system is very complicated.
Your doctor should be able to give you guidance and "what to expect" type information. If there is a patient portal or email you can use, be proactive and reach out to your doctor with your questions. If you're in the USA, patients very much have to actively navigate this stuff, and advocate for themselves. Your doctor might give you a pamphlet or booklet. Read it.
My doctor has given me all sorts of info on it. I was looking for more first hand account kinds of things.
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.
I was put on hydroxychloroquine a few months ago and it's great, but having a formal diagnosis now is making it scary.
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.
Sorry for the misunderstanding.
You're good. I appreciate the advice. :)
Oh I didn't know Seal had lupus, but he's awesome!
But did you know, that when it snows, my eyes become large and the light that you shine can't be seen?
Sorry, couldn't resist. I like him, too.
BAYBAY!