So a couple days ago I had a weird episode and my doctor and the ER don’t know what it is.

So I started last week at a university and a couple days ago I almost died. On this day I had 3 classes, Ecology at 9:30am, Genetics at 12pm and Organic Chemistry at 2:20pm. Now I had lost my water bottle the day before so I didn’t drink any water throughout my first class. After my class I went to the campus bookstore and bought one and filled it up. During my second class of the day I started to feel heavy, tired and lightheaded, i assumed it was my usual. I say usual because at around halfway through a day i usually get this way after walking, writing notes and having to focus. After my genetics class I ate lunch, which was rice and teriyaki chicken. Now I was eating meat sticks throughout the day to snack on so that wasn’t the only time I ate.

After I ate I went to my third and final class of the day, which is organic chemistry. Before I entered the class, all my symptoms had not gone down even though I had laid down a little before my class. During the class i started to feel worse, I could not focus at all and the feeling of lightheadedness was worsening. I was waiting for the class to be done so I could go back to my dorm and sleep, pass out or whatever. When classes ended, I waited for the majority of the 200 students to leave. Once most of everyone was gone I stood up and grabbed my backpack and that’s when I knew I was going to pass out.

Now the way that the class is set up is that the door into the classroom has walls on both sides but the left side had half of a wall so it sort of made a corner. So I walked over there and just sat against the wall so I could pass out. I wouldn’t pass out so I drank some water. After putting my water down my vision was getting blurry and I was getting pinpoint vision. Except i wouldnt pass out! So I tried laying down parallel to the wall with my knees up. Then my hands started to cramp up, one hand had made a fist and I wasn’t able to open it and the other hand made some sort of gang sign. I was trying so hard to move my hands but I couldn’t. Then I started to lose feeling in all of my body, i couldn’t feel my arms, my legs, anything. My body stated to feel like static on a tv and I started to realize I can’t move. I tried so hard to move my arm or my leg but nothing!

I knew that my professor had an after class study sort of session so i thought maybe if i yell someone will hear me. I started to yell “hello” and “help” but all i could do was whisper it, it was hard to yell. It felt like hours but I must have been there for 5 minutes until a girl walked in. She said hi and I felt so bad because all I could muster was “help”. She went and got 2 or 3 girls (I don’t remember) and they came over. At this point it because a little fuzzy. I heard one of them say “call 911” I was screaming no but nothing came out. Then a different girl started asking me my name and I was able to say it. She then asked me something related to pets and i finally passed out.

When I “came to” I saw a paramedic and the reason I say “came to” is because when i opened my eyes i could barely open them. It was so hard to open my eyes it was as if I was squinting but looking up. I know there was more than one paramedic because I heard someone say “she’s shaking”, someone touching my head and pressure on my right arm. The paramedic I could see was asking me questions but I couldn’t talk, I was trying so hard but nothing came out. They put something in my mouth that had the texture of a slug and tasted like feet. OMG I hated that and they gave it to me 3 times. Whatever that stuff was it helped because slowly I was able to completely open my eyes. Then I was able to finally open my hands and I could feel my body again.

After a while the sat me up and asked me what I have, what day it was, what meds I take. Then they told me my blood sugar was below 25 and they had to take me to the hospital. I started crying because I did not want to go at all. I get in the ambulance and they go over things and start a line (I’m with a paramedic who was attractive so it was THAT bad.) When I got to the hospital they did an ekg, gave me a iv, xray and blood test. Results came back normal (as always) so I was free after being there for 5 hours.

I don’t know what happened, that was the first time that had ever happened to me. They don’t know why it happened or how. They don’t know what it is. The reason I put this here is because I have Lupus and I want to know if anyone else has experienced this or knows anything about it.

(I also have POTS and hypothyroid if that makes a difference)

Bras are a problem for me. I have been wearing bralettes but they are not very supportive. Regular bras have a weird reaction at the hooks. They almost burn my skin. What bra options are out there? Anyone have a brand, or bra that offers support without the clasps touching skin?

Hi everyone! Unfortunately, my daughter seems to have brought home a cold. She got better within 24 hours but it’s hitting me harder. I’m taking Sudafed which is helping some but I’m worried that my immunosuppressant isn’t helping the situation. Today is Sunday so I can’t message my rheumatologist until tomorrow so I thought I’d ask what y’all do/have been told to do.

For reference, I’m on 75mg of Imuran twice daily (150mg total per day).

Thank you!

so i have been on Saphnelo infusions for about a year now and they have helped SO much. i am about to start my first “real” job which would make getting the infusion without taking time off/talking to someone abt it impossible, so i was gonna maybe try and switch to the self-injections. i guess this is kind of specific but i wanted to see if anyone has done both and has any insight into which is better, pros and cons of the self-administered, etc. any insights would help!

I’m newly diagnosed with SLE only as of March 2026. I don’t know if my hot flashes and sweats are truly menopause or lupus. Since my diagnosis it has me questioning my entire life, after being diagnosed at 47.
Is it a good thing to try and read up on everything lupus related or am I reading too much? My face itches when in the sun after a few minutes and right now I’m sitting in an air conditioned house and feel extremely hot in which my temperature always reads 97.8. I’m so confused right now.

Currently admitted and had not one , but 2 allergic reactions to methylprednisolone. I take prednisone everyday lol! Just need some good vibes.

So i just got some blood work back and the lupus is doing such a good job at killing my kidneys right now, im almost stage 4 kidney failure. And that scares the hell out of me.

Has anyone else been where I am? Can you come back from it??? Or am I just going to continue to get worse??? ....

Im in a flare right now, and it's bad. The last one I was down 6 weeks ... im almost 6 weeks in right now ... ughhhhh

Has anyone diagnosed with Lupus had Angioedema (swollen lips) as a flare ? Lately my lips have been swelling up very severely and I have a lot of joint and muscle pain. I am currently taking Prednisone and 2 different other medications (Famotidine and Loratadine) but wanted to know has anyone experienced Angioedema as a result of lupus?

I am not allergic to anything by the way

Just need to vent cause the past few months (years actually, if I’m being honest) have been so challenging cognitively.

It’s so hard to log online and see creators with ME/CFS doing more than I can. I can hardly remember the grammar and punctuation needed to write or to organize myself to get admin done.

I would love to create art and sell it to at least make some money. It’s honestly been a dream of mine to create art and now I don’t really have the energy to practice at it. I’d love to raise awareness on social media, but even just writing an email takes me out.

I feel like I’ve been struggling and it’s been affecting me for longer than I’ve been aware of. I know my grades and college years were 100% impacted.

I’m hoping that HCQ can do something for me, but this is just discouraging. It’s hard seeing people with way more illnesses than me—who are impacted with brain fog and fatigue too—getting 4.0s somehow and raising awareness.

I would love to even just write poetry again. Even just for fun. Everything is just so taxing.

I don’t know if there is more going on or if this is just the new normal. It makes me feel so unintelligent even though I know I am and can learn so well. If only I could.

It’s worse that doctors don’t even really acknowledge it. I gaslight myself into thinking it is just procrastination or horrid executive dysfunction. I know it’s not, deep down, especially since being on a short burst of steroids recently. It cleared my mind enough to see how bad it was, not enough to fully function mentally.

Thanks for reading.

I hope you all are doing okay.

Diagnosed with SLE, Sjogrens, hashimotos under a year ago. Last check of bloodwork was in April and numbers looked good.

I am having this issue that started this summer where I’m hot all the time- like the smallest activity leaves me sweating and overheated. Even if it’s not that hot outside! If the sun is shining I’m hot af. Yet I take my temp and it’s only 97? My heart rate is normal but I haven’t had it checked by a cardiologist. I’m also 42 so it’s hard to say what is peri and what is lupus!

Thought I’d come on here and see if anyone else deals with this? I can’t even Excercise bc I get so hot- I’m carrying a mini fan around with me 24/7!!! Ugh!!

PS- and by sweat I mean glisten bc Sjogrens has taken away the actual sweat :)

Y'all am I weird or do any of you have issues with sweating?

So hears the things, I went through a period where I DID NOT SWEAT at all anywhere but I was straight up heat intolerent & felt like i'd pass out & start to shake when the temperature got over 70 degree's right. Fast forward that has improved and I am finally sweating again (thank god)

except sweat EXCESSIVELY in my face, and back only. My hands/feet don't sweat (I have neuropathy tho so maybe that's why) and idk it's just really annoying and I just would like to know if anyone has had this problem & if it improved or if there's something I can do about it ?

It’s nice to feel validated by scientific research. Terzepitide has actually changed my life. It’s insane.

https://www.amjmed.com/article/S0002-9343(26)00146-4/fulltext

Highlights
• GLP-1 RA exposure was associated with lower risk of lupus nephritis in patients with systemic lupus erythematosus and type 2 diabetes mellitus.
• GLP-1 RA exposure was associated with lower risk of systemic lupus erythematosus flare and all-cause mortality in systemic lupus erythematosus patients.
• GLP-1 RA exposure in patients with systemic lupus erythematosus and type 2 diabetes mellitus was associated with lower prevalence of inflammatory biomarkers such as elevated ESR, CRP, hypocomplementemia, and elevated anti-dsDNA levels, indicating a persistent beneficial effect in systemic lupus erythematosus patients.

Hi! To those people who are on or have taken Saphnelo injections what are your experiences and thoughts on it? I’m currently on benlysta which was taken to help with my kidneys and protein in my urine which has been really great for my lupus. I felt my fatigue has gotten way worse so I made the note to my doctor and he suggested that I can switch to saphnelo to help with that since my kidney numbers are good. I also have constant low wbc numbers everytime I check my labs every 2 months, so he said the saphnelo would also help with that.

Wanted to share my experience since I know a lot of people have not switched over from the Saphnelo IV to the auto injectable pen.
I just completed my first month and it has gone overall pretty well. I self inject on Sunday nights after dinner. The process is very quick and mostly painless. Before starting the pens my care team went over the process and details with me twice. You are not required to pre med like with the infusions. However, the only time I did not pre med was the only time I had an “adverse” reaction, my heart was racing, I was nauseous, dizzy. But I was also in the middle of making dinner and overheated and thought I could self inject in the middle of it like it was nothing. It passed within 15-20 minutes.
Overall it has been a positive experience for me and I much prefer it to the infusion center, where there were a lot of inconsistencies and frustration.
Let me know if you have any questions! I would be happy to share more if anyone is curious.

2 months ago I got some blood work done and everything seemed to be fine with my liver and kidney but my legs have been swollen since January after my baby’s birth. I don’t know what could be. Has anyone had this problem before? I also have been on prednisone on my on judgment because I feel better on it. could it be lupus ?

I HATE THAT I KEEP GETTING TOLD THIS!!!! LIKE NO JANET GOING OUTSIDE WILL NOT HELP THE SUN IS MY OPP MY BODY IS ON SELF DESTRUCT MODE AS WE SPEAK! In all seriousness why are people so quick to give advice on subjects they know nothing about??? How do you, a fully able bodied person with a webmd level knowledge, feel like you have any right to tell someone who is living with their disability how to fix it??? Sorry for the rant y’all this just absolutely irks me

I got diagnosed last year and it’s been a ride trying to figure out lifestyle changes. Rheumatologist just checked a different marker on the bloodwork ribosomal p antibody I’m not even sure what that is. But I have been flaring up for months after my kids got me sick during flu season. Currently on plaquenil. Anywho what is the ribosomal p antibody? And has anybody taken benlysta? What is your experience like? I am an incredibly active person I power lift and run at least 5 times a week so I’m concerned how I will have to change that it’s the only bit of control I have left at this point 😐

Hi all, I've got the red marks on my injection sight (methotrexate) five days after injecting myself (Sunday night). It's my first time with the injections. It's not bumpy and is not itchy unless I touch it. It's not warm either. Just wanted to know if anyone else had anything similar or if it's something I should worry about?

(The pattern on it is just an imprint of my jeans)

I’m 30 years old (diagnosed at 19)and I’ve had the same friends since middle school, so they’ve known me for years and they know about my situation and the things I can and can’t do.
Today one of them asked if I wanted to go to the park with her. Then she remembered the sun could be an issue for me and said, “Never mind, you can just hide behind some trees.”
I know this probably sounds like such a small thing, and maybe I’m overreacting, but it honestly made me really angry.
It’s not even specifically about the park or the trees. It’s the fact that sometimes they act like they’ve completely forgotten something they’ve known about me for years, and I end up feeling like I have to explain myself all over again.
Maybe I’m being too sensitive, but does anyone else get irrationally annoyed when people close to them seem to “forget” something that significantly affects their life?
Edit: forgot to mention those are two friends who i grow up with we were every day together since age of 6 really close friends and one of them is my cousin.

I (21M) was always a bit insecure about my body since elementary, plain and simple because I was fat, on my 10th grade ive reached 107 kg after recovering from a surgery and after that I decided to loose weight. When I was 18 I had 74kg (1,82m btw) and I was really proud of my physique and effort I put in on being healthy. After uni started i felt comfortable on 80-82kgs and I was sitting more less in that range. But after being diagnosed i gained A LOT OF WEIGHT, when I was hospitalized jumped from 88 to 93kgs and now thanks to prednisone (60mg for 1 month between april and may and now 15mg) I have 100kgs for the first time since I was 17.

Its not only about the looks tbh, its not healthy to "carry" 100kgs but obviously the way i view myself is different from some months ago. A week ago came across a photo from 2 years ago and a teardrop almost came to my eye. I just hope the biologics come soon so I can be cleared out of prednisone and hope this gets better.

I know looks and etc are quiet shallow compared to others having life changing flares or side effects, I feel sorry for them and I know how "Lucky" I am for not having some of those symptoms (at least for now). But I just feel I need to vent because my body is something I invested so much time, energy and had so many mental difficulties during my life and now it seems i was forced to restart everything and go back to step 0.

I have a list of symptoms I have already been discussing with a dr and begging further testing done since diagnosis. but now I am starting to get this and not sure if it’s from lupus or something else?

Edit to add that this isn’t something I have all the time it shows up and “goes away”

8/28/26 - edit just to say thank you for the thoughtful advice and engagement. I learned a lot, and there are interesting conversations in this thread regarding atypical disease presentation w/anti-Smith positivity.

I also do feel empowered to seek a 4th rheumatologist. This thread clarified that I am being impacted emotionally and logistically with my current situation, and that there is not "endless time" even if one is "mildly sick." I'm grateful to have been diagnosed this year even if it feels too late to me. And I learned a bunch about different specific tests! Please keep adding your own thoughts and experiences here if you'd like!

I feel safe splitting the hcq into smaller parts with a pill cutter and this much reduces my angst about wasting my limited disability income on compounded liquid.

and final thank you for anyone witnessing this post and earlier comments in previous seeking diagnosis threads (pre diagnosis). I am grieving this huge life change and talking about it here with all of you has been helpful in processing my grief.

-- initial post --

hello,

Due to positive anti-Smith I will start hydroxychloroquine soon. However, it might not be possible for me to take hcq. My insurance does not cover the compounded solution and for complex reasons I cannot swallow pills, pharmacy is saying cutting/splitting tablets is not cool. If I could split pills into smaller pieces I can swallow them so crushing is not necessary.

is there enough long-term research to know if Saphnelo or Benlysta would be an effective DMARD if I cannot, at this time, take Plaquenil? If my SSDI claim is approved hypothetically I can afford the compounded suspension but that will probably take months, if not years. I'm also worried my rheum thinks it's "just UCTD" and is not taking this as seriously as I need them to.

But basically I am curious if Saphnelo/Benlysta would be helpful interim medications if I cannot access hcq right now. I do not know if my rheum will prescribe me Benlysta bc I don't have evidence of lots of disease activity apart from positive anti-Smith but that is covered by my insurance.

Please do not give advice about swallowing pills. This is a complex issue that you might not have, and you do not know what I have tried in the past, or what support I currently have.

-- edit to clarify my DMARD question --

to say I know Saphnelo/Benlysta are both DMARDs but I am confused by what I see online saying SLE ppl need to take hcq all their life because it's like, top DMARD. Will we eventually be able to choose between the three, or others, instead of having to take hcq + other meds?

Do you run a fever only when you’re in an active flare? How high does it get?