I am 42 F and have been diagnosed with DLE since the age of 12. I've been through different treatments. Every side effect a medication says may happen... happens to me. I had a med mess with my sensitivity to light and eyesight, thinking I was having a heart attack after an infusion, extreme fatigue from a med, and the always-so-reliable hair loss. I try to minimize the med prescriptions as much as possible. A rheumatologist once told me there is no cure for Lupus, and the course of treatments is meant to manage and prevent the disease from getting worse, and that makes me see things differently with DLE.

My rant is about me wanting to stop Methotrexate since it makes me feel like crap. My rheumatologist is ok with it but is proposing new meds. I feel like I can do bad all on my own. At higher doses, my hair started falling out, so I reduced the dose. It also caused lesions in my ear. I am at a point in my life where I can only define it as "accepting of my condition". Not one med has made me feel "Improvements". My joints hurt, and I have fatigue, which I've learned to deal with. I refuse to lose the hair I've worked so hard to grow because it's the only thing that is mine that makes me feel ok with everything.

I know we are all different, but honestly, has anyone actually felt continuous improvement with minimal side effects from the prescribed treatments? I'm exhausted with being a guinea pig, and I am accepting the cards I've been dealt.

46m, have had lupus symptoms mild for 20 years, recently had lower red blood cells, liver functions normal , they ran a Coombs test that came back positive, direct at least, didn’t get indirect back.
This one is a little new to me which has me more worried , has anyone had any experiences with this?

Hi everyone. I’m supposed to be starting methotrexate this week along with the hydroxychloroquine I’ve been on for about 5 years. CVS called me to tell me my estimated cost with my insurance for a one month supply methotrexate (4 pills, 15 mg each) is going to be $291? They said the dose that’s ordered requires it to come as the brand form, trexall. Has anyone else run into this? Is this the normal price for methotrexate? It seems like a lot to me considering it’s been around for a while and isn’t a biologic or anything. Thanks in advance.

I made the hard decision today to withdraw from a clinical trial that my rheum had nominated me for. It was a phase 4 study, meaning the drug (lupkynis) has already been FDA approved. This study was determine if, when given with a biologic, it should be a front line treatment for nephritis (many people already take this combination; this study was specifically to see if it should be given at the onset of the disease).

I found out that I had been nominated in early September; I cleared the initial phone screen, and was scheduled to do an intake on September 22. However, the office hosting the study sent me a reminder text with the wrong time on it, and when I showed up, I was told that I would need to return. I returned the following week, saw the doctor, and got blood drawn and a urine sample taken. The next day, I got an email asking me to return - they had found some anomalies in my urine sample, and wanted me to do another one, which I did, which meant two more trips up there (one to pick up the collection material, second to deliver the sample). I did that the week of October 6. Every trip is a two hour run trip drive for me.

The following week, on October 14, I emailed them and asked if my labs "passed." The next day, I got a response: "We're still analyzing them. We'll let you know Monday, October 19." Since my appointment to start the study was scheduled for today, I thought that was cutting it close, but, ok. I've never been in a clinical trial before, maybe they're all a bit disorganized.

Monday came and went. Tuesday came and went. Today, I decided not to show for my appointment, and maybe someone would call. Nope. Nothing.

I am much more disappointed than I expected to be. I'm guessing I'm not part of the study anymore, but it just feels so unprofessional not to communicate with me. WTF? At the onset of my lupus nephritis two years ago I was told that HCQ would make me feel better. It didn't, so they added CellCept. It didn't work, so they doubled the dose. That didn't do it, so they added Benlysta. Now, my disease is still active, but labs have stabilized (so, not great labs, but at least they are stable!). And then I get into a clinical trial...and it just ends with a whimper.

The disappointment is so high today. I know tomorrow I'll feel better, and probably even relieved, but I sure hurt today. 😞

I was just prescribed 25mg, curious if anyone had success fighting lupus fog and fatigue, also
worried about adding another medication to my list.

Hi this is my first time writing here, I’ve got lupus (SLE) diagnosed two years ago and have been treated with hyplaxy, imuran and corticosteroids (flazak and prednisone), my doctor started suggesting the bilogical therapy Saphnelo ( i heard there are other ones too, they’re not available in my country though i would have to travel), so can anyone tell me if its worth it and your experiences? Im still new to all of this and im unsure, im 22 and have been flairing up for the last few months and just want it to stop. Thank you in advance!

Diagnosed SLE, Sjögrens, Fibromyalgia, along with several more autoimmune diseases. I have been dealing with vision issues for about 4 years. My vision fluctuates from day to day. Some days my glasses are great and some days it's as if I have a completely different prescription. One day my eyes are incredibly dry while others they are constantly watering. I have an Opthamologist who specializes in treating dry eyes. We have tried all the medications available to treat my symptoms with no improvement. Has anyone else dealt with similar issues? If so, what have you tried and has it helped improve your vision issues?

The mod team has noticed an uptick in user reports recently. Two things in particular:
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More problematic are people are misusing the report function. Usually if they simply disagree with the sentiment of the comment or post. They'll report content as harassment when it isn't.

The report function isn't a downvote button. Abuse of the report system WILL result in the mod team flagging the reporter for report abuse. A couple of strikes can get you booted from Reddit entirely.

Thanks for reading.

Dx with APS in 2009. Even got a second opinion using the lab results from the first doc.

At recent appointment I talked to my doc about APS. She looked at my old labs and mumbled "oh, hmm, only weakly positive. I must have tested again a few times to make sure" She didn't. The look on her face, knowing she messed up. Then she brought up my 2 miscarriages in the early 90's really confirmed it, but I did have 2 live births. Made her run the tests last week, definitely do not have it.

Just a bit upset... the constant worry, baby aspirin, avoiding flying, long drives, no HRT... Wonder how long I didn't have it. Angry she didn't follow protocol in 2009.

I still have lupus but no APS. So a bitter sweet moment.

I had what I think was my very first lupus flare.  I was diagnosed with RA in May of 2025 and SLE in August of 2026.  Even back in May of 2025 my rheumatologist said she was probably going to be diagnosing me with lupus at some point and for the most part she would try treatments that would cover both conditions. After getting a definitive diagnosis We decided to try Rinvoq but I needed to be off my RA meds for a couple of weeks before starting.

I was unprepared for what we are calling my first lupus flare. This was the first time since May of 2025 I wasn’t on a DMARD or prednisone.  The scary part was my legs and feet.  My RA is primarily my hands and wrists.  During this flare I swore I could feel pain in each bone and joint in my feet and ankles individually.  I also had some really bad leg pain and a few times I felt like my legs were going to give out on me.  I am not sure what exactly I was expecting but this whole episode scared the hell out of me.

Luckily I was able to start the Rinvoq and I must say I am impressed.  After two weeks I am at about 85% remission with the RA and my low grade fever, malar rash, and pain in other areas of my body are gone with zero side effects. I also have autoimmune urticaria and my hives and facial swelling are greatly reduced.

I am just so glad I am back to what passes as normal there days!

I have always had flare ups before my period, it’s actually the reason I started seeking diagnosis. But when I was put on plaquenil that pre period pain got a lot better.

but then the past few months it has just been brutal. the pre period pain used to only last 3-5 days but now it is starting nearly 2 weeks before my period and coming on much stronger than ever before. so today when I got my period I was actually pretty happy because now it means there is a countdown to when the pain will be over instead of just increasing day after day without end…

I did recently get diagnosed with dermatomyositis and started Cellcept which could have something to do with it all but I’m not sure.

I do have a gynecology appointment in two days to get a Pap smear and plan to talk about this all but I haven’t brought it up with my rhuem because of all the horror stories and dismissal I have heard. I meant to talk about it in my appointment with him last week but chickened out.

so mostly posting this to vent but if anyone does have tips on ways to mitigate the pain or to talk to providers please let me know

this will also be my first Pap smear and basically my first gynecology appointment (have had a few ultra sounds through the diagnostic process) so if anyone has any tips on that as well it’d be much appreciated

I have hair loss as a side effect of Benlysta. If I keep taking it, will it eventually stop, so my hair is just thin, or will I go bald?

Living with dying

I hide from glaring eyes,
So they would not see
This monster eating away my insides,
Taking my life from me.

I wish to be alone,
On some abandoned island,
Far away from the world,
Where I’d be allowed to cry
And scream
Until there’s nothing left inside me.
But this demon in the shape of a butterfly
Strangles me in my dreams.

An unrelenting flood.
I gasp for air,
Just one more breath,
As my lungs fill with blood.
I pray for death.

I am afraid
That someone might notice
The little bit of sadness in me.

I want to be alone,
Broken and alone.

But deep down, I yearn to be seen,
By anyone at all.
And to be held,
Just for a few moments,
To feel another heartbeat.

I don’t dream anymore.

If I did,
I would dream of love,
A healthy body,
And a life without disease.

In a lush garden,
With vibrant flowers and honeybees.

But I no longer dream.

I live in a world that wants me gone.
People.
The sun.
My body.
And even myself.

I wish I was enough.
Enough to be loved.

Hi everyone, I'm an independent singer struggling to pursue my dream while dealing with lupus and problems affecting my vocal cords.

My health and energy can be unpredictable, and it's frightening not knowing how this might affect my voice and future as a singer. Being independent without a label or team makes things even harder, especially when the music industry demands constant content, networking and consistency.

I love music and don't want to give up, but sometimes I wonder whether I'm being unrealistic.

Has anyone here pursued singing with lupus, vocal cord issues, or another chronic illness?

How do you manage your health while working towards your goals? I'd really appreciate honest advice or hearing from anyone who's been through something similar.

Thank you for taking the time to read this. Sending a big virtual hug to all lupus fam 🫶🏽

Hey all. I (38F) was officially diagnosed with lupus in 2017. After a series of unfortunate events and multiple hospitalisations, it has wreaked havoc on my "looks".

Now I have always had a very low self esteem but now? I'm searching desperately for even a molecule of it. My hair is now a thin, lifeless mop, my body shape is that of a single spaghetti that swallowed a green pea with stick legs, my feet are dry and discoloured, 3 of my teeth have fallen out, my face just looks wrong (I've always seen myself as ugly anyway now it's emphasized more), and I just dislike myself even more.

It's enough that I'm battling joint pain, extreme fatigue and acid reflux all the time, now my suffering self esteem is sitting pem on top of it. How do you all take care of yourselves and manage to put yourselves together? I genuinely would like to know. Thank you 😊

Hi everyone,
I've been hesitating to post here because I normally never post anything on Reddit, but I'm feeling quite desperate and would really appreciate hearing from people who might have experienced something similar.

I'm 20F and was diagnosed with SLE and APS 5 years ago. For the past 2 years, I've been experiencing persistent pain around T6-T9 vertebrae, mainly on the left side. The pain is there 24/7 and seems to be getting worse over time.
The pain becomes especially bad when I take a deep breath. It feels like a sharp, stabbing pain that sometimes radiates a little. I also struggle to sit for long periods without back support, as this makes the pain worse. After a day at work or school, it often becomes even more painful.
I've discussed this with my rheumatologist, but unfortunately, he doesn’t seem interested. I feel like I'm not being taken seriously, and I don't know what to do anymore.

My GP referred me to a pain clinic, where I received an injection containing pain relief and anti-inflammatory medication, but it didn't help. I also recently had a ketamine infusion, which unfortunately made no difference either.
I don’t take any pain medication except panadol.

I'm honestly feeling quite desperate. It's exhausting to live with pain every single day, especially when I feel like I'm not getting any answers.

I'm wondering if anyone with SLE and/or APS has experienced anything similar

Hello everyone,

I just need a safe place right now where I can vent and just be scared and upset.

If anyone has been screened for and / or DXed with NPSLE, I would appreciate hearing about your experience because that's where my SLE journey is currently headed. How are you doing? How did the evaluation process go? We're you DXed or was it something else? What treatment has worked for you?

I have SLE and Sjogren's - DXed in 2024 and seropositive for both.

At the time of my DX, I had already been struggling with chronic and treatment-resistant headaches for 10 years which has given me persistent brain fog and cognitive impairment. During those same years, my mood disorder also got worse.

When I got DXed with autoimmune disease, I brought up the question if my chronic headaches could be linked to systemic inflammation because steroids were the only thing that worked.

I asked about possible NPSLE and was given a very "ehhh" response.

My previous MRIs were all normal, so there was nothing to worry about.

In 2025, I had a frightening neurological episode where I experienced sudden confusion, facial numbness and tingling, and after that, a headache. The MRI and CTs were still normal at the time. They said it was an atypical migraine.

I was flaring at the time, so I brought up NPSLE again and I still got an "ehhh" response.

Fast forward one year later and the numbness and tingling became a permanent feature. During this same time period, I was - and still am - in and out of flares due to extreme stress

I recently had another MRI done... and... it shows periventricular and subcortical changes that weren't there before one year ago!

So, NOW, it's finally time to get evaluated for NPSLE - amongst other things - and I'm really scared and upset.

I'm too "healthy" to qualify for disability but too sick to not pay for a high premium for healthcare (under ACA). I can't work because I have two young kids that we can't afford child care for and I'm also in bad enough shape that just being a half decent mom is so difficult.

My husband works two jobs but cost of living is so high and everything is so expensive that we live paycheck to paycheck. I'm so tired and discouraged and don't know what to do anymore. I literally have considered not getting anymore treatment so that at least my kids will be able to have what they need without any stress. The guilt is overwhelming. If I didn't have this stupid disease, we would be fine. I'm so tired.

I wish we could just leave the hell hole of a country the doesn't give a single f*ck about people who actually need help.

Does anyone else have a geographic tongue? I developed it in April and my rheumatologist changed my meds but we’re now not sure if it’s Lupus or medication related at all.

Curious whether anyone here is taking/has taken LDN? If yes, can share their experiences with it? Did you have any changes in symptoms and if you had any hair loss before did it help with that?
Thanks in advance

Nothing like having to ice your knee after exasperating it by doing nothing. 😅

I am diagnosed SLE and currently taking HCQ and Sulfasalazine.

I have had weird skin issues pretty much my whole life, but this eyelid problem popped up for the first time about a year and a half ago. Nothing I have tried has helped. It happened to start about 2 weeks after starting on HCQ, but my rheumatologist doesn't think it is related to the meds.

My docs keep saying they think it is dermatitis and allergy related. First derm I saw prescribed me antibiotic ointment. It helped at first, but then I became reliant on it, and it got to a point where it wasn't helping and was just making things worse. The rash extended to both eyes and around the edges of my face, down my neck, on my chest and back, and scalp.

My rheumatologist referred me to another dermatologist for a second opinion. 2nd derm also said likely allergy-related dermatitis and ordered a patch test. I half expected everything on the test to flare up since my skin is so sensitive, but the results indicated only a severe allergy to gold.

My wedding ring was gold so I had to stop wearing it, and when I told the doc about my issues with the steroid cream he recommended I stop using it. The rash improved a lot once I got over the topical steroid withdrawal, but now it seems this one eye is flaring up again and I'm feeling very hopeless.

I am so fed up with this. It is miserably itchy and painful, and I can no longer wear makeup or do anything to cover it up. I have now been using all hypoallergenic/unscented products for the better part of a year and I cannot pinpoint what is causing this. It seems like it's just cyclical and there is no clear pattern.

My rheumatologist said it isn't normal presentation for anything Lupus related, but since there is so much variation in the disease from person to person, she can't say for sure that it isn't the Lupus.

Has anyone else experienced anything like this? Any tips or advice would be appreciated!

does anyone else get annoying gpa-like ent involvement with negative anca ??? i‘m so tired of tasting copper coins in my nasopharynx and looking at bloody crusts coming out of my nose. it’s pretty obvious i’m in a constant sle flare considering my component complement levels, but at this point i’m starting to question whether it might be an overlap syndrome. no one thinks it would be worth it to take a biopsy right now because there’s a big chance my sinuses will decide to self-destruct even harder after that. we know it’s non-infectious after many tests anyway and it also only responds to systemic steroids 👍 yay

it’s also annoying because at first i get slightly mad at my family for possibly infecting me but then i start getting crusting and it becomes obvious that this is not an infection at all lol… ah the bane of being both immunocompromised and still having very active disease with weird symptoms

Llevo 3 semanas orinando con mucha espuma y me han llamado para repetir análisis de orina 24h + extracción. Estoy agobiada, me gustaría tranquilizarme o escuchar experiencias que me hagan llevarlo mejor o con mas información. Gracias!

I saw my rheumatologist for the first time 1.5 months ago and started HCQ and Sulfasalazine, and a 1 month course of prednisone.

I’ve had worsening joint pain and swelling, UV sensitivity, and had a 5 day episode last week of muscle spasms that made it difficult to walk or stand. I’ve been having foamy urine too but my urinalysis has been totally normal.

I retested C3 and C4 recently and they’re both lower now. (C3 was just below normal and C4 was just above normal. Now both are clearly low)

I’m supposed to see my rheumatologist in early Dec but I’m struggling to just sit here and see what happens, so I booked an appointment for next week.
But I’m worried about being seen as overly anxious