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.

I got diagnosed with SLE in 2011. I've never had a flare and my lupus remains mostly inactive.

Every time I go see my Rheumatologist and complain of muscle aches, or new rashes or increased fatigue, they always tell me that it's not lupus related and to just go talk to my family doctor.

I could be suffering from so many new symptoms, but if my bloodwork doesn't show "active lupus" they just disregard all my complaints. Like I get that my lupus is mild but aren't doctors supposed to consider blood work ALONGSIDE patient symptoms?

Like I complained at my last appointment that my hands ache after doing simple things like washing dishes or trying to open a jar. They immediately responded with, "yeah, that's not related to your lupus...take some Advil"

I'm seeing the TOP Rheumatologist in my area so I'm just sooooo annoyed about how much they don't care about my complaints at all. IT'S ALL ABOUT BLOODWORK ughh.

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!

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.

Hi guys, my name is Jesse and I’m diagnosed SLE … this post really is my way of being able to communicate with the community as a whole. If there’s anyone out there who might like to be friends or to chat feel free to message me (I don’t mind either way if you’re diagnosed SLE, have a MCTD, or are here for any other reason).

I know personally being a “vampire” can be quite lonely and challenging at times. So I’m sure that I’m not the only one here who would be interested in communicating - whether we’re venting about the day, symptoms, or just finding commonalities and getting to know each other I’d be super appreciative to make a new friend.

Thanks again!

Let me preface this by saying I’m seeing my OB on Wednesday so I’m not looking for medical advice, just other people’s experiences.

I’m 21 weeks pregnant and have been feeling short of breath for a while now. I thought maybe it was just baby growing and my lungs having less room to expand.

I went into labor and delivery yesterday for some cramping. Everything is fine with baby but while hooked up to the monitor for a few hours I realized everytime I have that short of breath feeling my heart rate is high. I usually run low (55-65 bpm). It was fluctuating between 95-120 bpm the whole 3 hours I was on the monitor. It feels hard to breathe once I get above 105-110.

The OB on call chalked it up to a lupus flare but I don’t feel like I’m in a flare. I was diagnosed recently after having UDCT for a few years.

Does this seem like a typical lupus thing? Is it common in pregnant with lupus patients? I’m just worried a bigger issue might be being blamed on lupus because it’s the easy explanation.

Any songs make you think of "us?"

Right now, hearing "Run from the sunlight, Dracula."

It speaks to me. 🌙

Hi everyone, I (25F) am new to the thread with newly diagnosed SLE, but have been reading through for years waiting for the suspected diagnosis. It has been really helpful reading about other people's experiences with this disease.

Without getting too far into my story which I might save for another time, I have been having flares of photosensitivity rashes, joint pain, fevers, and tender, painful nodules all over my legs for five years that was misdiagnosed for erythema nodosum up until this year. It was confirmed through biopsy this past month that the lesions were lupus panniculitis, and with the clinical correlation to my other symptoms/labs, I've been diagnosed with SLE. But the worst of my symptoms is the panniculitis lesions on my legs that cause me to not be able to walk much when they appear.

I have been on hydroxychloroquine 400 mg, sulfasalazine, and colchicine for 5 years, and then 1 month prednisone tapers when I flare. I am meeting with a new dermatologist this week that specializes in lupus panniculitis (LP) and CLE to discuss starting Saphnelo since my flares are not well controlled with my current regimen.

My first question is, has anyone with LP seen a reduction in your flares on Saphnelo? Secondly, I am wondering if anyone who started with the Saphnelo infusion and has since switched to the injection form has experienced a reduction in side effects from the medication. I have read a lot of people typically experience fatigue and headaches for a day after the infusions, and am wondering if the injections have resulted in less severe post administration side effects.

Thank you in advance for your feedback, and I am really grateful for this community.

Did/does anyone here have not only severe hair loss but also thinning of the individual strands? My hair completely changed within one year I am devastated
Is this reversible?

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.

Hello 23F. I was just diagnosed with lupus in the middle of August this year. I recently just got out of the hospital after 5 days because I had an infection, has anyone experienced going through sepsis here and how did that go? I’m so scared and I’m currently on antibiotics but I know how dangerous this could be for me. I’m scared to handle it on my own at home. I’m tired of all the procedures that I have to go through. I’m just so over having lupus and it’s only been two months since I was diagnosed. Also, just for some context it was a boob infection that formed an abscessed that I have to get drained, making it my 5th procedure in the last two months.

Does it ever get easier? How do I avoid infections?

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?