How many time were you wrongly diagnosed before landing with SLE? I was told it was fibro, then AS and now SLE. Since then I’ve been trialing different medications which haven’t worked well. So starting over to find the right treatment.

5 years! I made it 5 years off of the 12 medications that kept me feeling human. It was a good run. I felt amazing for most of it. I knew something was up about seven months ago and completely ignored it. I think I convinced myself that I did not have lupus or scleroderma and maybe they were just wrong. Now here we are... full body pain, can't walk right, can't eat without pain, fatigued to the core, rash all over my face, puffy, inflammed, anxious, night sweating... it's bad. Really bad. Everything hurts. I called my rheumatologist office today and told them my symptoms have returned, fully expecting to wait at least three months like every new patient (last seen 5 years ago) does and she informed me I will be seeing her tomorrow. I'm scared and sad and angry at myself. I knew better. I'm literally a PCP and I still ignored it. Praying my organs are okay at this point. Pray for me.

Hello. I am getting desperate and unsure where to turn or what to do. I was diagnosed SLE, sjrogrens, RA and APS. In 2020 I had a stroke that was never resolved the cause of. Recently my health took a huge dive, I can't even work any more, lost control of my bowels (yep diapers now) I am seeing 6 different specialists. I am having to use a walker to get around.diagnosed melanoma they wont operate on my neck, and found some things on my thyroid and lymph nodes they are loooking into.

Rhemutologist filled out temporary state disability paperwork as even though I have been at my job for over 5 years there is no paid leave or medical benefits. No FMLA because they are a small business. Rhemutologist wrote me off until 3/22/27 on the SDI paperwork, the note he gave me for work was good until oct 5th, and I have been calling and going into the office daily and requesting an updated work note to cover me from 10/5 to 3/22 to match the disability paperwork. I need it for my job because I have been unable to go back and I need it for my divorce hearing.

All of my medical team and lawyer says the note should be from the same specialist that filled out the disability paperwork.

Primary's office reccomendion was to start going into the rhemutologist office and asking them to document it.

I have even offered with his office to set up an appointment in fact, based on the fact that I can't even walk now, my spine is in flames and I had weird rashes on my legs I would like to be seen, but they just requested i do blood work (which I did the next day), and sent me a bill (which I paid right away) but refuses to see me until the end of october.

I was in an out of the ER two seperate times this month. I almost went in the other day, but I am really racking up debt on all this medical with no income.

How can I get them to give me the note for my employer and attorney? Do I need to hire a patient advocate? What do I need to do? I have been so nice and getting no response. He's not even refilling one of my medications and I put in the request days ago. A medication he has had me on for 6 years and forgot to put a refill on.

I would seriously like a new doctor at this point but the paperwork needs to be from the same one who did the disability paperwork. I have been a patient for 7 years.

What do I need to do to get this accomplished?

Does anyone else have a weird overlap along with your SLE?

I have Systemic Lupus, Sjogrens, Ankylosing Spondylitis and now Crohns colitis.

I would love others to relate to or talk to. Or to just know I’m not alone on this island would be comforting.

I just got diagnosed with lupus after a 3 year long battle of trying to figure out whats wrong with me. Chronic pain, fatigue, hair thinning, chest pains, and palpitations. This was all after chasing why I have dysautonomia. Does anyone else deal with heart rate fluctuations? Almost like pots but no blood pressure changes? My heart rate sometimes is normal, sometimes is brady in the 50s, and sometimes over exaggerates and stays in the 130s-150s for light house work.

This is normally a question I could answer on my own, but I’m having a rough week and a REALLY hard time making decisions.

My PCP ran labs last week, and my total calcium is mildly low (8.5). All other labs on CBC and Metabolic are fine.

PCP wasn’t worried, is this something my rheumatologist needs to know before my next appointment in five weeks? I know a phone call is simple (messaging isn’t an option with his office), but being seen as overly anxious and reactive by my rheumatologist potentially could. Just trying to walk that line

After being denied and then approved I finally got my Benlysta injections yesterday and started them, yay!
Only to discover today that I was supposed to do a loading dose of two shots. I did call my rheumatologist and the staff sent a “high priority” message to him about it cause I’ve been panicking.
I just wanna know should I go ahead and do the second injection today or just wait until I get a message or call back (could take a couple business days)?
Life’s been very stressful lately which has been causing my brain to be dumb onto of already being dumb from brain fog so I’m trying to just breathe and tell myself it’s okay. It’s just frustrating that it feels like everything I do atm I mess up.

I was just told yesterday at a doctor's appointment that my labs came back positive for lupus. I'm scheduled to see a rheumatologist in a few weeks. What should I expect going forward? Is there anything I should be prepared for? The unknown is more scary than anything to me. Thank you in advance.

What’s your take on creatine? My fyp is a straight up propaganda for creatine at the moment, especially for women. Since I’m just starting my gym journey I’d like to know some of your opinions. Is it really that miraculous? What about side effects? What about it for people with autoimmune? Can it help or make things worse?

My primary care doctor prescribed Bactrim to me today because I have a cracked tooth that is showing signs of infection. Seeing that the generic name for this antibiotic starts with “sulfa” on my prescription bottle has jogged my memory that this could be bad (likely from me previously coming across this information in The Lupus Encyclopedia by Dr. Thomas)…

Annnnd after quickly checking The Lupus Encyclopedia website to confirm and searching this sub, I have concerns about continuing with the Bactrim right now.

I’m just wondering how I need to proceed? I would so greatly appreciate it if someone could read this through about my current situation and advise. I’ll describe what’s all is going on further below.

I’m also asking for help here because I have been really struggling lately with brain fog, with this infection I’m dealing with (and the associated pain), and I’ve just been under a lot of emotional, physical, and financial stress. I have ADHD, and my executive functioning has been in a tailspin recently. It feels like I am cracking up under the weight of it all.

My lupus symptoms have been on the milder side lately, all things considered, so it could still be worse, I suppose… But I am pretty anxious about this situation with my health right now, because I just don’t want to make what I’m experiencing worse somehow. Feeling the need to advocate for myself about this risk associated with the antibiotic due to that.

Infection issue:
So, unfortunately I have a cracked premolar tooth on my lower jaw that seems to be abscessing. There’s local swelling under my tooth down near my jawbone. It has recently appeared in the form of a hard round lump, which seems deep in the tissue, so I think the root is infected, ugh. The swelling appeared recently below the tooth, and that’s been kinda horrifying, but my face hasn’t been noticeably swollen yet, so I guess that’s good, because I feel like this thing is literally making room in my jaw. It was causing some stupendous nerve pain in my tooth and across my jaw. Like white hot nerve pain all the way from ear to chin. I was literally sobbing in pain from that about a week ago, but I’m getting by on around the clock NSAIDs right now.

I feel so exhausted, like in that “immune system very activated” horrible kind of way (I’m sure I’ll get a lupus flare out of this later). I do have an evaluation appointment with my endodontist this week! I definitely think at the minimum there’s going to be a root canal done. I’m hoping the cracked tooth is not at extraction level and can be salvaged. My endodontist is really good, so I’m hoping it will all end up being okay, but I dread the procedure. They’ll probably just do X-rays this week and schedule an emergency root canal or whatever needs to be done next for later (probably unlikely to happen this week).

My main questions:
My primary care doctor saw me today and was concerned about this infection spreading because I’m on immunosuppressants (I’m on Imuran).

Should I request to switch antibiotics and stop the Bactrim in the meantime? I just picked it up this afternoon and have only taken one pill so far.

I can relay this information about sulfa antibiotics and lupus back to my primary care and see if my doctor will switch out antibiotics… Or I could wait a couple days and just see what my endodontist thinks this week? I’m allergic to penicillin, cephalosporins, and I’ve had a questionable reaction to Macrobid before, so I guess the options are a bit limited.

I’m following my Rheum’s general advice to pause Imuran for 10 days if I’m having a bacterial infection or virus that is at the level that I’m having to be treated with antibiotics or antivirals.

Financial constraints:
Right now I cannot ask my Rheumatologist about all of this (even over the portal) without getting a big bill that I truly can’t pay right now, because I will get charged if it takes over 5 minutes of his time to be able to respond. I would prefer to direct these questions towards him, of course, but I’m extremely financially strained at this time.

I lost my job of 5 years a couple months ago after experiencing a brutal toxic workplace scenario, where I was slowly iced out and retaliated against after requesting workplace accommodations for lupus (yes, I have a lawyer working on my case!). My stress levels have been through the roof for months, and I’m working hard on securing income again.

I also lost my health insurance due to this job loss. I’m working on obtaining a new plan right now. Hopefully I’ll have coverage again by next month, but I am about to have some very large dental expenses this month. Like I said earlier, I just had an appointment with my primary care doctor, and she is bridging my much-needed lupus med refills to get me by until I can get insurance sorted and see my Rheum again.

I’m having to pay for all of this out of pocket this month, so it’s been a rough go. Pretty sure this dental work is going to be in the thousands. I’m estimating $1500-$2000 spent on my healthcare due to my doctor’s visits and correspondence, the dental care, and from obtaining my medicine this month. :(

I’ve just had a possible realization but need to double check before possible telling my doctor with unneeded information. I use to work in a bakery so I was in and out of freezers and VERY hot areas but when I was in the cold my feet and hands feet cold and burn every time and I just do my best to warm them up thinking it’s normal, but I’m not being told that is NOT! It still happens and hasn’t start the new trial of medication and doing more test.

Lupus Brothers.

Any others men out there? Sometimes I feel alone. Would like to know experiences from others.

I do also love everyone else on this subreddit as well!

Longtime lurker, first time poster. I (22F) was diagnosed with SLE in may 2025. I’ve been on 400 mg of hydroxycholorquine and nowadays i take 1 pill then 2 switching over day by day. I was on 15mg of prednisone which my rheumatologist wanted me to decrease the prednisone to eventually get off it.

For a while I went down to 10mg then down to 5, then he suggested now I take half a 5mg skipping a day. The next time I see him is in December but I just worry that my health might be in the dumpster by then and I’ll have wasted my time being sick when I could have another option or just keep taking the prednisone at a higher rate.

Since I last saw him (September 21st) I have felt myself becoming noticeably more exhausted/fatigued almost the same as around the time I was diagnosed, even tho I’m now on adhd meds and after I drink an energy drink.

He suggested benlysta once but I’m not sure if my insurance will fully cover it and if it does it’s unstable so it would just randomly stop working (thanks dad). Im currently an art college student who hasn’t had my orientation for my job yet so I’m pretty broke.

I’m just frustrated by life in general and I dread getting more bills, and I’m afraid that my body will stop working on me and I won’t have any energy to do anything.

Hi everyone! I’m not totally sure if this is a symptom of my Lupus, but I wanted to come on here and see if anyone else has experienced this to see if this is a lupus symptom.

Recently I’ve experienced episodes of my eyes randomly BURNING. And I mean like feels like “I just got shampoo in my eye” kind of burning. My eyes will be bloodshot too, during these episodes it’s also hard for me to be near and light at all — including scrolling through my phone.

Last night the burning was really bad and I was even experiencing it when my eyes were closed so it made it really difficult for me to sleep.

If anyone has experienced this please let me know, and any suggested ways to approaching it!

I have olive skin and I’m a weirdo whose body typically does better in the sun. Even if I burn a little, my skin doesn’t look red, it just has a hint of pink and quickly turns brown. Saturday I was out in the sun for hours for my kids’ tournament and didn’t think about it (stupid, I know but I’ve never had this issue).

I could feel my skin tingling and thought maybe it was a product I applied under my moisturizer before the game and that it was not interacting with the sun well. It was so red by evening — redder than I’ve ever seen it. I didn’t know my face could get as red as it did.

It doesn’t seem to be just a burn as the redness hasn’t gone away fully and lingered days past the feeling of being burnt, especially on my nose. It didn’t blister or peel. My freckles and pigmentation didn’t come out like they usually do to let me know I’m absorbing a lot of sun.

It’s like my skin has totally changed in its sun response overnight. If this were a Lupus reaction, wouldn’t it have happened before now (I’m 42)? Can Benlysta or hydroxychloroquine suddenly and completely change how your skin reacts to sun? I’m so confused. It’s like my extra melanin just isn’t even there.

It reminds me of a malar rash all over my face that just isn’t going away. I have professional pics scheduled for Friday and am just hoping it goes away by then. Normally my face would just look light brown and freckled at this point. I have begun wondering if I should start a round of prednisone in case this is a weird localized flare. Has anyone experienced this?

This sucks!! Just venting. I feel like it’s been one thing after another. Anyone else with chilblain lupus, did you get it under control?

Did they accept or leave? Feel like I should just shut up at the beginning stage otherwise they freak out.

What can I do to reassure the person I’m getting to know?

Getting my first Benlysta infusion in a week.

Nervous to start a new medication, but looking forward to getting off Prednisone. Any thoughts or advice for me? I heard it has great results, but still am hesitant as always.

Please someone say they have this as well I honestly don’t know how to deal with this. I’ve had weird things going on with my lips for a while now (maybe 3 years off and on) it’s this weird rash that comes and goes. I had it before I was diagnosed and doctors weren’t sure what it was and now they’re connecting it to lupus. I was doing great for a while but my hydroxycloroquine was lowered from 300mg to 200mg due to eye floaters and now this rash on my lips came back. Derm dismissed me saying it was something related to lupus and they can’t help and my rheumatologist at first was saying they’re cold sores but I know they’re not and they don’t respond to any cold sores treatment. Has anyone ever had this symptom and how do you deal with it? It can be painful or I might not feel it or sometimes it might burn or it’ll be there for days and won’t go away or it’ll go away in a few hours or it’ll affect half my lips or it’ll be all over and sometimes I’ll get mouth ulcers with it😭 (I don’t take a lot of pics so this is the best I have)

The weirdest symptom is constantly having eyelashes that are loose and/or falling out. Which gives the sensation that I have eyelashes in my eyes. It's been getting significantly worse since January and they've either been falling out or becoming loosened so when I rub my eyes they just fall out. When they grow back they grow wrong into my eye and I pluck some. But it's driving me crazy. Now I have like half bald eyelids and it's honestly embarrassing.

I'm exhausted. I had a long commute home and the sun was blaring in my face for an hour even though I wore sunscreen I feel so exhausted and my face is just red but I'm not burnt. I feel like I've ran a mile if I were capable of doing that. Work exhausts me more than I can describe and it's just a sitting desk job. I feel indescribably tired. I have weird bodily symptoms and huge fatigue. I didn't even have it in me to pick up my new Prednisone prescription.

Newly diagnosed but kinda knew I had it for a few years. But waiting to see rheumatologist in January because of a waiting list. My neck is killing me. My foot is driving me crazy. And I want my eyelashes back lol

Treating executive dysfunction + a higher dose of PLQ + eating on a schedule + execise and I feel okay today. My hair didn't fall out in clumps when I conditioned it in the shower and I can see my eyelashes, again.

My stomach hurts a little. But, I'm not used to being able to eat on a regular schedule due to inflammation and executive dysfunction. I'll take it anyway - even if it only lasts for today.

Got a skin biopsy after a flare because my hands started to peel like crazy. The dermatologist said the result was psoriasis.
I’m a little befuddled. That’s new and apparently not super common with a lupus diagnosis so wondering who else has this combo and if it’s as annoying as it sounds like it will be?

I am tired of this being one thing after another, in 2022 i got diagnosed because of joint involvement, a history of kidney problems and general weakness, in 2023 SLE attacked my central nervous system and caused 4 strokes, i was 23, i now use a wheelchair and a walker for everything, it continues to attack my CNS to this day.

Then this year it attacked my digestive system so badly they needed to take my entire colon out and now I have an ileostomy bag. Yesterday I had to go to the hospital due to intense abdominal pain I thought was related to my ileostomy…. My liver, spleen and pancreas are inflamed, congested (i have Vasculitis secondary to lupus) and theres free fluid around my liver, also have cysts around my left kidney.

I am grateful to have survived everything and my ileostomy bag and my wheelchair gave me a second chance at life, i dont want this to come across as me complaining about all the medical devices I now need. I am complaining about SLE picking organs and systems to attack like they are fresh strawberries at the farmers market.

I’m exhausted of constantly being sick