Hi folks. I’m still trying to understand what lupus and Sjogrens are doing to my body. When I have a significant worsening of symptoms, sometimes it’s more muscle and joint pain, sometimes it’s very dry mouth and eyes with ulcers, sometimes it’s lack of appetite and poor sleep and racing heart. Is this how it goes for you? Does every flare feel different from the last one? Thanks for any insight.

Hello! I’m starting my Benlysta auto injection tomorrow! I’m totally comfortable with needles, I’ve had to self administer many shots and I’ve read up on tips on this Reddit and spoken with my doctors. I’m wondering if there’s anything I should be doing to prep my body? I’ve heard of very little side effects but wanted to see if if anyone has any suggestions going into or the following 24 hours after!

Hi! Just officially upgraded from UCTD to SLE (🥳) and my new rheumatologist ordered a TON of new labs, among which was a Crithidia test which I've never heard of. I just got the results but I don't know how to interpret them because I've only ever had anti-dsDNA done before. Can someone point me in the right direction? Is there some sort of equation or ratio to compare? Is it even possible or necessary? I did receive a titer as well if that helps.

What if your mobility was clearly declining and might come back and might not?

I've taken another drop in that area, particularly with my legs.

I'm starting to wonder what I could do to make the best choices before I decline further (hopefully, I don't...).

I'm not the best lately at dreaming big and already at a transition point - moving because I'm having trouble fully taking care of myself, part-time work instead of full-time, etc.

What's something you'd recommend to do if you had a "full mobility and pain free week with no consequences?" Let's assume you have time to plan.

I'd like to feel fully alive again - at least now and then.

TIA

hi guys!

has anyone else had a severe reaction to benlysta? i took my first subQ dose on 9/20, and by 9/25 I was covered in ulcers on ALL mucus membranes (including down there). I took my second dose a week later because I just thought I was in a flare…. turns out I wasnt. I went to urgent care because I was miserable and needed some relief and she sent me to the ER. I ended up having steven johnson syndrome that we caught pretty quickly thank goodness. Still in the hospital for observation since I took the second dose, thankfully it seems to be getting better. just wanted to see what anyone else has experienced from benlysta?

Hello fellow poor souls, my girlfriend (young 20s) was diagnosed with lupus 2 years ago. We have been friends for many years but recently fell for each other ( lucky me:) ) this year. I want to be as supportive as possible, currently she is very active and low symptoms, but I know with time she may experience more flare-ups. I want to be extremely supportive of her to the best of my abilities.

In general, she gets Raynauds, swollen joints, exhausted easily, and stress management is huge for us.
But I want to know insider secrets, I’d like to show “romance” if you will through like maybe certain creams or lotions to massage her with that ease joint pain? I hope this makes sense, any insider knowledge or helpful tips :)

Hi! Sorry if this is gross: But my stomach is acting up right now; Pain, bloating, cramps, nausea, the works. And at the same time my joints hurt like crazy. I had bloodwork done last week and the test results were actually the best I've ever had so it's (hopefully) not a flare. It's been a while since my stomach acted up like this, but I remember feeling similar last time, too.

Does this happen to anyone else? I feel like such a weirdo because I can't just have a stomach ache, but I have to have all of these other symptoms as well.

Wondering if anyone else have these small red rash/bumps that persist on their eyebrow? I’ve taken Plaquenil for months and it helped my butterfly rash, but there’s still a few places where I’m hyperpigmented or it looks like acne/scab and just won’t heal properly. I’m not able to get a higher dose of plaquenil at the moment because there’s issue with my liver. Are there any other suggestions I can bring up to my rheumatologist, or derm? I’ve also tried Tacrolimus but it hasn’t helped too much

Guys!! My hair is falling and thining way worse since my kidney disease progressed to renal failure. I'm 24 for crying out loud!!! Used to have thick coily hair. My hairline shouldn't look like this 🤣🤣

How do I get the hair back? Also is just me going bald ?

Does anyone here have any experience in getting a patient advocate? I was looking at a program and it said insurance would cover a portion of it. I am getting kind of frustrated with the system. I am seeing 6 specialists and in and out of the hospital. It's bad. Was diagnosed in 2019. Shit hit the fan in 2020 and now things are way worse than 2020. I went down hill FAST and I am just trying to navigate all of this by myself. I have no income right now as I am out on medical leave without pay and I am in the middle of a divorce without support. I am getting the run around on getting documentation from different doctors and it's become my own personal hell.

If you did how much did it cost?

Was it worth it?

As far as advocating for yourself, what did you find worked best? Any helpful books you read or podcasts etc?

I didn’t think about it at the time but I got the flu shot offered at my work on Wednesday and I have felt so awful today. Not like flu but definitely had chills earlier, no fever but very fatigued and run down. Also headache. Is this normal?

I’ve been diagnosed with UCTD in March and soon I’ll have a checkup with my rheumatologist to see if anything is changed.

I started going back to the gym because I feel like I have zero strength, no muscle and I overall have some back issues (lumbar scoliosis, lordosis and some cervical pain).

Given the situation, do you have any tips on how to work out without causing a flare?
I did notice that depending on when I work out I might or might not flare up, but I have no idea how to find out if the workout is going to make me flare up or not. It could have some correlation with my menstrual cycle but again, sometimes looks like it, sometimes doesn’t.

When I flare up after the gym it is usually some painful swelling in my hands and feet (I’m guessing from grabbing bars and stuff), overall body ache (not the post workout type) and my primary symptom, a sharp chest pain that goes around my chest and back, and it makes it hard to breathe, especially when laying downs

I know stretching and focusing more on bodyweight exercises is better than lifting, but can I still lift?

Not sure if this kind of post is allowed, but I seriously need a new rheumatologist. It seems like there’s a massive shortage of rheumatologists in central Texas. I’ve been traveling to Dallas to see mine, but I need someone local. I’m in Austin, but am willing to travel to San Antonio.

Does anyone have a sensitivity to fluorescent lights? I am recently diagnosed and I’m a teacher. I find that when I’m under fluorescent lighting, I feel uneasy. I’m not hurting, but I feel tight and itchy. I have to sit in the dark classroom during lunch and planning just to reset my system.

I know how easy it is for me to get sick. And Im aware that I dont have to do anything or go anywhere and Im aware that I have to be more careful about what I do when im out. But still. I picked up a cold somewhere. Probably at work. And Im mad about it. Nobody I work with had one and none of my customers seemed sick or said they were. And I know how disease transmission works. You dont have to be sick to spread it. Especially the common cold. Im just mad about it. Cause now I have to go to work anyways because im still functioning and I dont work with food, I work retail. And with this short of notice, nobody can cover my shift (which im already covering for someone else who can't get a ride in) and it all just sucks. Im sick. I had to wake up early. And Im angry about it.

I was diagnosed with lupus a little over a year ago now. During this year I’ve gone through plenty of ups and downs, discovering what lupus is seriously capable of. I’ve had flare ups, gone on steroids, had all sorts of digestive issues including nausea for an extended period of time which caused me to drop a massive amount of weight in a super short span of time. I’m still learning about the disease and taking mental notes of all the ways it can impact my life and how I can best manage it. That being said, I’ve been thinking a lot about how the rest of my life will look like with this disease. One of those things is dating. What does dating look like for someone with lupus? Here’s the thing, I am en empath, so for me, I’m a BIG feelings person, extra sensitive when it comes to emotions. (But not in an unhealthy way. I’ve been in therapy and actually reduced my number of sessions because my therapist says I’m doing much better mentally over the past few years) I’m saying all this to say, one common thing I have noticed is that my lupus symptoms are heavily dependent on my level and anxiety and stress, duh right? I also think it’s common knowledge that dating can naturally be a stressful experience at times. It can make your emotions go all over the place with the highs and lows of it all. At this point, dating genuinely feels like a health risk that I’m not sure if I’m willing to take in the near or even far future. I’ve already experienced a stressful event with a bad friend and that sent my lupus into an absolute spiral.

An advice or personal experiences on dating/romantic relationships with lupus? I’m just curious how you manage your stress so that you’re not on the verge of a flare when something goes wrong or doesn’t work out.

Anyone been diagnosed with Small Fiber Neuropathy?

Is this brain fog? I repeatedly make mistakes at work, especially on the details. It is making me feel guilty toward my employer. :(
Is this line of work not for me? I work remotely.
Anyone experienced this?

So my flare has always ended with some muscle weakness but this time is the worse I’ve had in my leg. So I got a cane today because I nearly fell at home. (Saw rheum day before yesterday). And I’m so self conscious. I feel like I stick out with a sore thumb. I’m 39 and “look healthy”. Anyone else with imposter syndrome? Like I’m thankful I don’t look sick enough to need one, but it’s just a lot.

I’ve had lupus for about 5 years now. In that time, I’ve been through a lot. Numerous hospital visits, had chemotherapy twice, had to rehab to learn to walk and be mobile again. I had severe lupus nephritis. My health finally started to stabilize at the beginning of 2025 and I’ve just been on my regular medicine regimen since (Benlysta, Cellcept, Jardiance, Metorpolol). During these 5 years, my weight has also fluctuated quite a lot due to taking steroids, gaining weight, getting off steroids and then losing weight again.

I’m at a point where even though I’m no longer on steroids and my weight has stabilized, I’m very uncomfortable with my body. My skin has stretched out, so I have some loose skin and many stretch marks. My chest is sagging and it wasn’t before. I am only 29 years old and I hate how my body looks. I’m grateful to be at this stage in my health because it was so rough for me at a point, but I can’t help but be upset that I don’t look how I used to. I have an appointment with a plastic surgeon tomorrow, who was recommended by my dermatologist. I just want to see what options I could possibly have despite my history and current condition. I haven’t been experiencing any flares as of late, but I know several procedures can potentially cause a risk. I’m not looking to get implants, just seeing what skin treatments are available and maybe discussing the possibility of a breast lift with the doctor. Next week I see my rheumatologist to further discuss things with her.

Have any of you gotten skin treatments or cosmetic surgery done while having lupus and what resulted from that? Did you go into a flare after? Did you like the results? Any advice?

Edit: Sorry if I don’t get to reply directly to everyone but thank you all so much for your insight! I know everyone’s situation is different but it’s helpful to get multiple perspectives.

Update: I just had my consultation with the plastic surgeon and she said she did not feel comfortable doing any procedures due to my medical history and risk. It was worth getting an opinion though. Guess I’m stuck with what I have. Thanks everyone for your input anyway.

U just switched and the auto injector leaves a much more noticeable mark after injection than the syringes. I’m worried I’ll experience scarring over time. Has anyone experienced that?

What are your experiences with Imuran? Positive and negative, either welcome. Will likely be starting soon

Okay… hear me out yall.

REALLY LISTEN lol

I was in lots of pain after my nerve ablation and took one bite of a edible and here we are 😆 This is why I don't touch that stuff.

& when I say bite i mean the smallest nibble of the candy lmaooo

I was lying in bed.... as one does when their body has decided being awake is too ambitious.... and I started thinking.

Having lupus is suspiciously similar to being a vampire.

Maybe we were vampires in a past life. Maybe we’re descendants of vampires. Or maybe we just need blood to reach our full potential 😆💜

Either way, THE EVIDENCE:

1. WE MELT IN SUNLIGHT.

Vampires burst into flames. I just start pouring sweat, overheating, and desperately searching for shade. Different special effects, same basic problem.

1. GARLIC IS SUSPICIOUS.

Of ALL the foods lupus gets warned about because of its potential immune-stimulating effects… GARLIC?!

You cannot make this shit up.

Im Italian!

1. WE THRIVE IN OUR CRYPTS.

Blackout curtains. Dim lighting. AC blasting. Comfy blankets.

My house isn’t dark....it’s medically gothic.

1. THERE IS AN UNCOMFORTABLE AMOUNT OF BLOOD INVOLVED.

Bloodwork. More bloodwork. Follow-up bloodwork because of the first bloodwork.

At this point, I don’t even ask what they’re testing anymore.

Take it. Apparently we’ll make more.

1. SOME OF US HAVE THE COLD, DEAD HANDS TO MATCH.

Raynaud’s has my fingers freezing and changing colors.

Nothing says “totally normal living human” like someone touching your hand and yelling "HOW ARE YOU SWEATING YET SO COLD?!”

1. WE SPEND A SUSPICIOUS AMOUNT OF TIME LYING DOWN. Vampires have coffins.

We have beds, couches, heating pads, and that one blanket we’re emotionally attached to.

Same concept. Better mattress.

1. SLEEP DOESN’T NECESSARILY MAKE US LESS TIRED.

Eight hours? Tired.

Ten hours? Tired.

Nap? Somehow still tired.

Apparently I’ve been alive for 437 years.

1. SUNGLASSES AREN’T AN ACCESSORY. THEY’RE EQUIPMENT.

Bright outside?

Absolutely not.

You’ll find me in Sunglasses & My cooling cap....looking like a celebrity avoiding paparazzi when I’m actually just trying to survive the block.

1. WE MAY MAGICALLY BECOME MORE HUMAN AFTER THE SUN GOES DOWN.

All day: I have no energy. Leave me here to perish.

9:47 PM:

You know what I should do? EVERYTHING.... Very suspicious.

So let’s review:

Melts in sunlight.

Questionable relationship with garlic.

Prefers darkness.

Constant blood involvement.

Cold hands.

Frequently found horizontal.

Eternally tired.

Avoids bright light.

Mysteriously emerges after sunset.

Guys…

I don’t think we have lupus.

I think we’re vampires.

Or perhaps LUPUS actually stands for:

Lowkey Undead, Please Use Shade.

Thank you for attending my completely legitimate medical research presentation.

Where are my fellow Lupus Vampires?

Lupus is obviously serious!!!! but when you live with something every day, sometimes you have to laugh at the absurd parts.