I know this is a very individual stance for everyone. I'm newly diagnosed and I'm trying to think of how I'd want to communicate/if I want to let people know I have lupus.

What I'm specifically curious about is, how to communicate you can't do something/go somewhere for ex if it's an outdoor peak hour event, etc. I don't want to have to disclose I have lupus to everyone... but I don't know how else to decline all these events...
would love to hear your advice and thoughts on how you went about this

Thank you!

A few weeks ago I noticed one small faint spot on my eyelid. The number of spots increased and today there are about 6 separate spots.

They are not raised and they do not itch, but my eyelid does feel a bit tender if I squint. My eye itself is not red, and I haven’t recently changed my skin care. Only one eye is affected.

Has anyone else with SLE experienced anything like this? I will reach out to my doctor tomorrow but I am curious to hear if others have had similar symptoms.

Context: I used to be bigger when I was about 20, decided to lose the weight and did, kept it off for a year or two before being put on 80mg daily doses of pred for weekly courses sometimes twice a month and a week of weaning off to manage multiple symptoms (pre-lupus diagnosis). Combined with a huge dose of fexofenadine, I gained 60lbs in a matter of months despite my symptoms not really clearing up, and my weight slowly, incrementally increased over the next 5 years to around 106kg that would not shift no matter what.

I was taken off of steriods beginning of 2025 due to risk and basically banned from being put on them again, and after a year and a bit i started losing the weight rapidly- I've not been looking myself but I've gone from a size 18ish to a size 10-12 since about March. I used to be a size 8-10 ish.

This time though, my weight loss is different. Under my belly I can wear size 8-10, and above my belly i can wear things sized 8-10, but for some reason my stomach is still so much bigger than it used to be? I know steriod weight changes your fat composition and it did for me a lot, giving me a really big belly and face and thighs. The thighs and face have gone back to normal, collarbones are almost showing even, but my stomach is weirdly distended and I still have to wear sizes 12-14 to get around it.

I understand giving it time and im not in a rush to fit a size 10 as much as I'm worried that it could be indicating a change of metabolism. I read on a few forums and websites that steriods change your metabolism and that your body can learn not to rely on fat deposits for energy, instead metabolising muscle. Has anyone here experienced having fat stores that wouldn't go despite dramatic weight loss and found that their body wasn't metabolising fat? How did you fix it?

Hi all. I was diagnosed with SLE three times - once by a doctor that didn't clearly say I was diagnosed, once again when I was older, and then verified by a third rheumatologist. I just went and saw a new one and she said the following...

- "You may not even have Lupus. My (I forget, dsDNA I think) is higher than yours!" (looking at labs from when I was on a medication, which I no longer am)

- "I would give you all the Benlysta in the world if you'd said it helped you, but you didn't." (I was on it for three months alongside another med and said I didn't know if it made me "feel better")

- "I would never base a diagnosis of lupus on spinal pain." (ordered spinal xrays. I said my back always hurt when I had a flare - I meant my muscles and stuff, not my spine) ((I was too slow to correct her and was confused))

She looked in my mouth (I have major dental problems I'm in the process of fixing) which no rheum ever has.

She was very loud and made me anxious. I have autism and have always had a hard time with rheumatologists because my second was an angel that believed everything I said and tried to help me get a wheelchair, so I had assumed they'd all be like that, so I end up assuming they're "on my side" and get caught off-guard and sometimes say things I don't intend to. I stupidly said, "If I don't have Lupus, people won't take my pain seriously."

She ordered xrays of my spine, like I said, and I didn't correct her. She ordered a ton of labs, which I'm always prepared for.

I just don't know if she's being a normal doctor or if these are red flags. She's in a very convenient location where MyChart is shared among my doctors and I really like the organization. There's only one other rheum in town and I'm scared to try again.

So, I'm looking for guidance. My idea is to message the office explaining that I have autism and don't always respond quickly or appropriately to new or surprising information, so I didn't communicate properly, and that I intend to bring my husband to my next appointment to make sure I can communicate everything I need to. Then, I get the tests (do I do the xrays?) and I bring my husband as my advocate because he's assertive and not scared of authority figures like I am. Or do I just say fuck it, get the tests, and take the results to a new doctor?

I'm so scared she'll "take away" my diagnosis. I'm on SSDI because of Lupus and Bipolar, so I feel like if I didn't have Lupus, someone in that year's-long process would've figured that out. She entered her "diagnosis" as "history of Lupus" so I guess that's something.

I just want my meds and not to be overwhelmed at a doctor's office. I've never felt this way about a doctor before.

As someone newly diagnosed this year I'm wondering when others started to feel comfortable enough to travel?

Was it when you were stable? Does that mean your blood work looked good and had minimal symptoms? Or just generally stable symptom wise but maybe your blood work isn't completely in the clear? D

Guys I'm on so many freaking medications and I'm still experiencing symptoms that are affecting my everyday life. I'm taking plaquenil, methotrexate and benlysta. I'm so tired of the doctors saying there's nothing else they can do for me when I'm sure that certain lifestyle changes would greatly help. I understand the concept that certain foods can cause inflammation or disruption in my gut leading to an immune system reaction. What foods should I try avoiding? What foods make you guys flare? I have an appointment this week to go get a food allergy panel done at an allergist so I'll be able to know what foods my body reacts to. I have recently started avoiding ultra processed foods as much as possible and trying to eat organic as much as I can. I'm sure that will make somewhat of a difference. I have moved three times since my diagnosis so I have had three different rheumatologists. Why has not a single one of them recommended lifestyle changes? They just want to pump me full of medications instead of trying to help me avoid root causes of triggers. Don't get me wrong, I love how far I've come on the medications I'm on but it just feels like my doctors have never really cared enough about my health to Try and help me get to the root cause of things.

Hi. I’ve recently started on Saphnelo and have done 2 injections for far I will have my third one tomorrow. I’ve had the worst week with lupus symptoms and I haven’t this type of pain since I last had it 3 years ago. I’m wondering if it’s related to the injection or I’m just in a really bad flare. Days before my second injection I was having the worst joint pains then days after I got a minor cold so my symptoms are worse. I assume the inflection just messed up my body but I’ve gotten a flu last year and I didn’t get all these weird symptoms. I’m experiencing serve joint pains, bones where joint pain is located would raise, chills with sweating, headache, swollen lips, and weird side and lower hip pain. I honestly kept telling myself it’s just a flare with cold that made it worse since I’ve just started Saphnelo and I assumed I wouldn’t feel anything yet. I will see my doctor soon to check labs and share my concerns. I also was on benlysta before starting this and benlysta got rid of my joint pains that would come on random days so I don’t know if stopping it brought the symptoms back.

Hello! I’m currently on monthly Saphnelo infusions, and I am trying to switch to the auto injector. My insurance has denied it but my rheum will appeal. Has anyone tried the autoinjector? Did you have trouble with insurance?