Hey guys, I am diagnosed with SLE and wanted to share something that helped me. For the past 10 years I was feeling so physically and mentally exhausted. So much to the point where I was on the highest dosage of stimulants and even began taking medication for narcolepsy/shift work disorder —and even that didn’t work so I stopped.

Almost three months ago I completely cut meat out of my diet, just randomly. Within the first week, I noticed the mental exhaustion fading and the physical exhaustion soon went away.

I’ve always eaten a pretty balanced diet, but since cutting out meat..I’ve mainly been eating more fruit and vegetables and I feel like the inflammation is gone.

I’m not a nutritionist, but going vegetarian has shown me more results than the long ass time of being on hydroxychloroquine ever has.

Just thought I’d share with you in case you’re wanting to give it a shot.

Hello everyone! I hope you’re all having a good day! 😊

I’m unable to speak with my doctor for a little while unfortunately but I had to take some antibiotics (penicillin of some sort) to fight off a minor tooth infection before I was able to have a tooth pulled last week, and ever since about day 2 of the antibiotics I’ve been riddled with mouth ulcers and had on/off rashes on my face that were similar in shape to the infamous malar rash. I suppose I’m just wondering if it’s possible that the antibiotics could have triggered a flare of some sort? Has anyone else experienced something similar?

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So I keep having Fodzyme advertised to me on Zuck-related SM, thank you algorithm. Probably because I continually advise people to keep a food diary for symptoms, and I do that because I now know gluten, tomatoes, mushrooms and bleu cheese cause immediate flares for me.

Before I throw money away and gamble with causing a flare, has anyone tried it on one of their no-no foods? Even if I couldn’t do gluten, I’ve been gluten free for 13ish years (never diagnosed as celiac, but definitely a flare trigger). But I sure would like to get tomatoes back (most recent discovery, triggers lupus and gout flares), they are in everything I love.

Anyone tried it? Did it help any or not at all? Thank you!

I have SLE lupus and clearly am still in a flare. I take medication for it, but I am just ugh. I’m sorry, I’m just really sick of it. My job is stressful, my living environment is like walking on eggshells, and honestly it’s probably making my symptoms worse. I feel so defeated.

Hi! I started hydroxychloroquine this winter and it has been a game changer for my health. However I live at the beach and now that it is sunny and hot consistently again I am in agony! The sun sensitivity is real and it feels like someone is using a needles to prick every nerve in my body when in the sun and long after exposure. I can't sleep at all after sun exposure I am in so much pain. Has this happened to anyone else? Any advice? I am on 400mg a day.

Finally made it to Benlysta, in time for my worst flare I’ve ever had but I’m so very new to this. On day 9, I am so out of breath, weak, but I can tell the B shot helped me because my body doesn’t look as red. I don’t know if I should call my rheumatologist tomorrow but I think 6 days of being bedridden would necessitate a doc appt? I don’t think B and HQC is enough or am I crazy?

I have things I need to do and my world is already so diminished by limited social activities that I woke up super emotional and sad today. Trying to keep from sobbing just typing this. Which might be a side effect of the shot, I believe. I’m literally over here wanting to cry over friendships I lost 10 years ago. wtf

Please tell me your experience with your B shot side effects and how long until you felt the medicine helped you in a marginal way that moved the needle for you? (They switched me to this because of exhaustion.)

I’ve heard of others on this subreddit having loved ones and friends misunderstand their lupus and make them feel like shit about it… I luckily have not had any interactions like that up until tonight.

My husbands lifelong best friend has also become one of my closest friends since moving to my husbands city 2 hours away from my home town. He’s someone I allow myself to hangout with even when I’m not feeling totally up to it energy wise, because I trust him and feel comfortable in his presence. But I do often opt out because, well, lupus like to take all my spoons and I need to rest.

Tonight we (my husband, myself, and our friend) were playing “we’re not really strangers” and we got to the third level which is the deepest level of questions. We got “what do you think the other person needs to let go of”. Our friend told my husband he needs to let go of his perfectionism, I told my husband he needs to let go of him feeling like a burden when he needs extra emotional support. And then our friend told me I needed to “let go of identifying with my disability”. And I was like “huh.. okay let’s hear him out, where is this gonna go.” He told me that I needed to not let it control how I navigate the world and if I’m having a worse day to just push myself to do more. He said it makes a world of difference when he pushes himself to brush his teeth even when he couldn’t bother to. How even when I’m having a bad day maybe just hangout with people anyway because I’m bigger than my illness and don’t have to identify with it. Something along those lines.

While he was going on I felt myself holding back tears and shaking. I never felt so misunderstood, shocked, dismissed and invalidated by someone who I know means well. I just couldn’t understand why he thought that was good advice. It took a lot in me to tell myself to forget it so I could answer the question for him, which I told him to let go of fearing vulnerability in relationships. To which he took well. Then I said I needed to go to bed. Since this was happening at our house.

I went to shower and immediately broke down crying. I kept thinking about “this is exactly the stuff I read other people talk about on r/lupus, how they feel so invalidated and misunderstood by the people who are close to them.. I did not expect it to be him. I expected more..” he basically just assumed what lupus was like (he was talking about it like it was depression) and was telling me to push myself and be stronger. It made me feel so dismissed. I would expect people close to me to ask questions to try to understand lupus more instead of assuming. Also for him to give me advice on something he knows nothing about.. everything about it felt awful.

So in the shower I was running through my head if I could carry on our friendship as normal if i never brought this up again.. the answer to that was no definitely not. I would assume he just thought I wasn’t trying hard enough whenever I would cancel plans, that if I post awareness about it on social media that he would think I’m milking my disability as a personality trait instead of a chronic illness.. I would just feel so misunderstood and distant from him and that feels awful. So that left me with the conclusion that I had to say something, I have faith he will be open to seeing that he hurt my feelings.

So this was super difficult for me, I bring up my inability to stand up for myself and speak up to every therapist I have because I need help having a back bone. And I thought if there’s anyone I can practice sticking up for myself with it’s with our friend, I trust he’s a good person and will handle it calmly. So I took my shower, got dressed, and walked out to the couch where our friend and my husband were sitting. I immediately started to cry.. because of my social anxiety and fear of confrontation, this was so scary for me. I had a whole script I would open up with but that went out the window because the tears came first. So I said “I’m sorry I’m holding in tears right now” cried a little then said “I just wanted to say something so I didn’t feel so misunderstood and I trust that you meant well I just feel really dismissed in my experience with lupus after hearing your answer for me” and he immediately locked in and was ready to talk about it. He told me all the things he misunderstood, how he was being shallow (his words!!), how he was speaking on something he knew nothing about, how it looks from the outside and how he can see how he got that wrong and where his wrong perspective comes from because he only knows me as my masking self so he assumes my lupus isn’t that bad. He says everytime he sees me I present the same way, and so he assumes my baseline is really good and I’m just using my lupus as a cop out to not hang sometimes. And I thought damn so many people on the lupus subreddit struggle with friends saying the same stuff to them I never thought it would be one of my own too. He admitted that he was totally wrong on giving advice that he knew nothing about. My husband chimed in many times saying “you know when you gave your answer telling her to do more, I had the complete opposite reaction, I wanted to tell her to do LESS, to identify with her lupus MORE, because I see how much she pushes herself”. And I was like holy shit that is so validating he sees me, he doesn’t blame me. My husband also said “she is so good at masking her pain sometimes I forget she’s in the middle of a flare when we’re around others. You have definitely seen her on some of her worst days and she still had a smile on her face so you wouldn’t see it”. And I said “yeah something about others seeing me sad or in pain makes me incredibly uncomfortable, so I am always smiling otherwise id cry if they noticed” lol.

So we had a very lengthy (about 45 mins) conversation about how he’s owning up to misunderstanding me, and how my lupus affects my life. And we hugged and said I love you. And I’m just super grateful I felt brave enough to say something, because that moment would’ve haunted me forever if I didn’t stick up for myself. And I would’ve held resentment against him for downplaying the hardest thing I’ve ever been through in my life and it would’ve ruined how happy I feel whenever we hangout and our friendship. I had all the faith in him that he would be mature at receiving that conversation and he definitely delivered. And I’m so glad that I got to experience sticking up for myself so I can feel stronger and more confident sticking up for myself in the future.

Sorry for rambling it’s 3:30am here and I’m way past my bedtime. I just wanted to share this before brain fog made me forget more details. And hopefully it’s cohesive enough to read. Hopefully me sharing this story encourages others to stand up for themselves too. And to allow yourself to own your lupus diagnosis MORE. Thank you for reading!

TLDR: my friend misunderstood how lupus affects me and tried giving me advice to just push myself more. I mustered up the courage to stand up for myself and tell him he was wrong in that advice and how it made me feel dismissed. He took it really well.

New here, need advice

I'm diagnosed SLE. Can it turn into Lupus nephritis? For a month now, my kidneys have been hurting. Absolutely nothing has helped. Multiple ER visits. The only marker that is high is my inflammation. It's through the roof and has been for over a month. I've been urinating blood. My RA appointment is Monday the 7th.

What tests can I ask for to see if it's evolved to that?

I also have multiple autoimmune syndrome. I have 4 autoimmune diseases...5 if you count fibro (not autoimmune but treated like one)

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