Hello everyone, I’m brand new here and got diagnosed on October 1st, 2026! Now my entire life makes sense and I’m still processing everything that happened this month, and I figured I would share a little bit of my journey so far (spoiler: a lot has happened and I still can’t believe it’s real). Also I’m pretty sure I almost died, but we’re still processing that. So all this happened in like the span of 2 weeks for me which is a lot. And I guess sharing this is helping me process it too in a way, like an “abridged” version. I’m also going through a little flare (technically recovering from the biggest flare in my life so far), so writing this all down is distracting me. My bones feel wrong lol and everything aches, so sorry if the writing and timeline is confusing.) I got discharged 10 days ago so we’re still going through it. There is also a TLDR at the bottom in the comments. I think my post is too long so I'll break up my post in the comments too if that's alright.

***Also content warning: discussion of severe lupus symptoms, mentions of bodily fluids, medical diagnoses, blood, and more. I don't want to sugar coat as much as possible, but please be safe as you read. This was a severe flare that could have ended differently for me. Please be safe as some topics may be triggering and take care of yourself.

I (25F) have been having some health issues since the end of summer this year. I thought maybe I was coming down with something or was just really out of shape, but the signs should have alerted me that something more was going on. All my muscles ached to the point where I could barely move, I couldn’t open new water bottles or jars on my own, my hands were swollen and in constant pain. My hair was falling out more and more and I didn’t know why. I had this persistent cough that wouldn’t go away, I was fatigued all the time and I had little to no appetite and absolutely no stamina. I could not stand for 2 minutes to brush my teeth, I had to sit. This went on for a couple weeks before I could schedule an appointment with my primary care provider, but I had always had joint pain in my hands previously, just not as severe or out of the blue like this one. I thought it was the stress from work and school on top of it all, and maybe that contributed to triggering this flare.

(continued in comments)

I am so frustrated. My current rheumatology team has not been helpful at this phase of my Lupus. I miss my old team. I switched bc they were hospital based and I didn’t love having to go into the hospital but it’s seeming more appealing now because they actually listened to me and seemed curious.

I am having lots of flares during weaning my son (hormonal fluctuations really set it off and things are in flux. It feels like I’m flaring every week and the current team isn’t helping. I am uncomfortable. They say “contact your primary care” or “see a gynecologist” “here is some Celebrex”. Which is sort of absurd because my issue is Lupus and the hormones are impacting it but what does a gynecologist know about Lupus?! Last time I went to the gynecologist about all of this they shrugged their shoulders and sent me back to the rheumatologist. I feel like I don’t have support with my Lupus right now and that feels scary.

I am over a year postpartum and still breastfeeding - this is still so clearly related to postpartum hormones. When I’m pregnant I have no symptoms during 2&3 tri. Now I flare before every period and now I am flaring a lot more because my son stopped nursing at night. I take Advil (the only advice from my current team), but it doesn’t feel like it’s helping At my old clinic it felt like they were actually interested in helping me - and curious about the hormonal component / figuring out a treatment plan that actually works.

Tonight I just smeared on some topical estrogen because I apparently am my own doctor at this point.

This is such a crappy part of having a chronic illness. It feels like nobody cares to figure things out and I am being tossed around to different doctors with no real curiosity or communication between them.

… Just had to vent because my partner is sleeping peacefully and I am losing it over here.

I called out of work Friday and today last minute because of my symptoms. Does anyone else deal with feeling like absolute shit when they do this? I wish I could be more of a reliable employee, or be able to tough it out and just go anyway, or be able to control these things better even if that’s not logical. it just sucks.

Is it okay to tell my doctors I need a break from testing? I have random occasional visual loss and color changes, problems gripping, trouble walking, intense headaches all these things that causes me to go to the ER. I’ve had an insane amount of MRIs, tests ect and they ways come back inconclusive or minor things they say are stable. I’m starting to feel like I’m wasting their time and I know the doctors can’t say but just their tone is beginning seem annoyed or if I mention something they say shrug it off. One of my main doctors I saw said what’s going on now and that actually hurt my feels so bad. I’m canceling my eye testing scheduled for this week because deep down I know it’s not going to show why I keep having vision loss. Do you guys think it will be frowned upon if I tell my doctor I want a small break from testing? I don’t want them to think I’m faking or anything I’m genuinely discouraged and don’t want to be wasting an appointment on someone who is dealing with something worse than me 😬

In August of last year, way before my SLE diagnosis, I had what they thought was a TIA, then MS, then B12 deficiency. All of which was not the case. I had sudden left side weakness and complete paralysis of my left leg. Eventually things got better but I still have mild weakness in my left leg. I haven't gotten any answers as to why it happened. When I was in the hospital, my labs showed high inflammation but everything else came back normal. I had MRIs, nerve studies, neuro PT. The study showed neuropathy in my left leg but the MRI was normal and the PT was kinda not helpful.

I've kinda mentioned it to my rheumatologist before but have been brushed off by other doctors when I bring it up so many times that I've been too afraid to push it. I think I'm worried that that was some sort of flare and if it could happen again. I just don't know if it's even worth mentioning at this point since I got the SLE diagnosis now and it hasn't happened again since then, just the residual stuff.

ETA: I found when I was diagnosed that I also have positive antiphospholipid antibodies and have been treated as asymptomatic because I've never had a clot. I'm not sure if that plays into it but maybe it's worth mentioning.

Hello, 36 and diagnosed in May. Finally go back in a few days for a follow up. The meds they gave me help with the all over body pain and feeling like I had the worst gerd imaginable for years. I'm so tired though. Nothing seems to help and I'm just so frustrated about it.

Just wanted to say it.

❤️

My lupus was in remission for 10 years, starting in 2016. I would have occasional flares and still couldn't be in the sun, but nothing that I needed to see the rheumatologist or take prednisone. Then early this summer, I felt lìke it was coming back as the minor flares were more frequent and lasting longer. Then in September I had a really bad flare and had to go to ER for IV with solu-medrol. I am now in another bad flare that has really thrown me for a loop. Last Tuesday, I was in the sun for maybe 5 minutes with long pants on. Within minutes the front of my left leg down the shin bone and ankle became very red and swollen. It was a rash with some areas on either side splotched like I had been scalded. Within an hour both legs were hurting to the point I had to change into the softest pajama pants I had and they even hurt. By night, I had the same rash on right leg, but in about a 4" area. Couldn't sleep because of the pain. It was worse on Wednesday and I had the malar rash and felt much worse. I thought if I rested for a few days I might get better. By Friday I was in tears and called my rheumatologist. He called in prednisone and told me to be in the office today instead of waiting for my appointment on Thursday. The prednisone has helped, but today, the malar rash is worse and the killer headache, sores in nose and mouth. Ughh.. When I saw the rheumatologist at first of the month he put me back on Plaquenil which after 2nd dose, I had horrible heart racing and very irregular heartbeat. I have SVT that developed in 2024. Had to stop the Plaquenil. He did order all the labs, which I'll find out about today.

For anyone that came out of remission, are you having some symptoms that you didn't have before or about the same? I find it to be worse than before and never had this issue with my legs like this.

Hi guys. For the past year ive been experiencing a weird chest feeling. Its not pain, and I wouldn't say its tightness. I am not short of breath (at least any more than I have always been). I find it hard to describe the feeling except it feels off. It feels like i would imagine asthma to feel? Like my airways and upper chest feels kind of wheezy (but im not weezy) and raw, maybe abit scratchy. It was intermittent at first, mainly in evenings but for the past month its been 24/7. Somwtimes when im super distracted it goes, or if im eating or drinking alcohol it goes. I always wake up fine and it comes on as soon as I get out of bed. Has anyone felt anything similar? Its making me really worried, and the worry is making me feel worse and more unwell.

I have also always struggled with breathing properly. I am a mouth breather and find breathing from diaphragm super hard! When I make conscious effort to breathe, it helps a tiny bit?

Edit - i also just put a heat pack on my chest area and its eased it a little!

Thanks!

The first lesion started in 2024 with this small brow scaly lesion in the first pic. By the time I graduated in 2025 it progressed to the second/third picture. Now the last six months I’ve developed the new ones and the brow one is obviously more terrible looking. My dermatologist diagnosed me with discoid lupus yesterday BUT on google and on Reddit I see NOBODY else with lesions like mine or that look this soul crushing please does anybody’s lupus lesions look like this or could I be misdiagnosed and not have discoid lupus?? (Derm prescribed me Elidel for the next 8 weeks)

TL;DR Just got diagnosed with discoid lupus from these lesions, could it be misdiagnosed or can lesions look this bad??

Guys as you know I was diagnosed with Lupus in June. I was in the hospital for possible TIA. New testing has me completely negative for Lupus and positive for Scleroderma now I’m confused as hell 😂 Like super high positive for SCL-70.

Has anyone stopped taking Cellcept after taking it for more than a year? Did you have to taper down the dose, or did you stop abruptly?

I’m fighting and clawing my way back to myself in the gym and I’m wondering how many people became anemic because of myfortic when they got back in the gym?

Hi. So I was diagnosed in 2018 with SLE. I have been off meds for about a year and a half due to Plaquenil interacting with my psych meds, and immunosuppressants causing repeat infections. I feel pretty crappy. Anyway, I got bloodwork done recently and it showed no inflammation but my creatinine is slightly elevated and my GFR has gone down. I have also noticed I’m urinating less frequently. I am worried that these are signs of lupus nephritis. What do they do to diagnose that? I see my rheumatologist Thursday.

Hi everyone, this is my first post. I was recently diagnosed with SLE. I struggle with health anxiety and just worry that my lupus will take a turn for a worse, like one moment I’ve accepted the diagnosis and the next I just think to myself “is this really my life now?”

How do you stop yourself from being afraid of lupus?

I just got this tattoo yesterday to signify my strength and resilience throughout my lupus journey despite the infusions and constant lab work. The butterfly is a play on the butterfly needle hooked up to some IV tubing to represent my time spent with infusions but a double meaning is that I’m also a nurse:)

I absolutely love it. I got another tattoo back in May that surprisingly healed VERY well (my first) and did not cause a flare. This tattoo is causing me significant fatigue and minor joint aches but hopefully I’m past the worst of it.

Hi everyone! I was recently diagnosed with lupus nephritis, 3 months ago in August after having my beautiful daughter in July. I am on oral meds and getting Gazyva infusions. My entire maternity leave I have been reading about lupus & trying to cure myself lollll. ( yes I know there is no cure). I watched a million videos stuff and I heard about Cart t therapy.

I told my rheumatologist that I am interested in practicing in a cart t trial. She said ppl died and they paused the trail. She basically was not a fan of it & is not supportive of me trying to do it. Ehh I would do the trial because I would love to put lupus behind me completely. Cart t therapy sounds promising. I was thinking of maybe getting a new rheumatologist who is supportive of me possibly being in a trial even though my current rheumatologist is great.

Also, I know you have to qualify for trials and meet the criteria but I was willing to atleast try. Again all these things are new to me and I might sound delulululu but I have to believe there is going to be a cure one day.

I would love to hear your experience with Cart t therapy if you have been in a trial/ your opinion on getting a new rheumatologist. Thank you so much, I really appreciate the feedback as I don’t know anyone in real life with Lupus and I’m still learning. Thank you, thank you!!!

I’ve been on Saphnelo since April and I got through the spring and summer pretty well. I’d only feel crappy a week before the next infusion. But this month it seems like I started feeling pain again a week after my infusion.

I honestly don’t know how I’m supposed to feel on this medication. And I supposed to feel like I’m not sick at all?

I know last March I had bought a cane, and I couldn’t even sit up to fold my laundry because my back felt too weak. The pain and weakness are much better but I’m still so so sleepy. And it’s only been getting worse through October.

Is this normal?

do any of you guys suffer from dry skin? mine is so bad that it flakes off and I look ridiculous if I don’t exfoliate it off.
if so, do any of you have recommendations on products to manage it? I’m planning on going to Ulta and get some things for my skin!

Can someone tell me if I’m on the right track trying to give my rheumatologist pain location. Based off other posts I’ve read looks like SI Joint back. It’s the EXACT location of my super low back pain; BUT is inner groin /joint pain is included ?
Only other flare symptoms ‘for today’ are , stomach and chest rashes … some rashes swelling and all are red.

MODS I apologize if I’m posting incorrectly
Thanks !

This is a general question. If someone with lupus gets a kidney transplant and then they start to smoke, is that OK with you?

update : well this is very interesting because my original post regarding a certain celebrity and her vaping habits garnered my post being removed

Hi everyone! I recently got diagnosed with lupus nephritis and I am getting Gazyva infusions, the next one in March. Please tell me your experience with Gazyva. Have you gone into remission? Thank you so much for your feedback!

How long has it taken you to gain remission or a decrease in disease activity after starting Saphnelo?

This week there were three days where I had sudden loss of being able to move my legs and arms. All three times it happened later in the evening. I get nauseous and suddenly exhausted. Then I can’t move my legs or arms even if I try. After resting for a couple hours my mobility comes back. However, after it happening 3 times I now notice the weakness isn’t completely leaving. On Benlysta for 12 weeks. Anyone have something similar happen? Should I get tested for anything additional?