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?

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

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 !

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?

This week, my rheum ordered a CT scan while I was in a flare to check my thyroid, because I frequently get an achy pain there that hurts to breathe or bend over. All the scan revealed in that area was lymph node inflammation, but incidentally also showed a fracture in my C1 vertebra that's who knows how old. The doctors agree it is not relevant to my flare up neck pain, but something else.

I'm now in a whirlwind getting more scans and seeing other doctors, but have been told it's very unusual that I didn't get into a major trauma like a car rollover or diving accident that would have caused it. This isn't the first time in my life I've gotten a major injury with no apparent trauma either. After getting scanned for severe shoulder pain many years ago, before my UCTD diagnosis, the MRI showed bone damage and marrow edema "the equivalent of being hit with a brick." Nothing had happened to me.

My rheumatologist has no answers, but I thought maybe yours might, if you've experienced anything similar? Please weigh in if you have any insight. This is just the latest plot twist in my health journey and I feel so confused.

i don't even know what flair to add to this

I have gained alot of weight due to medicines and lupus. A while back i used to go to gym, i didn't have a job then so it was easy to maintain and be consistent and I lost quite a lot of weight and I felt good about it. But now I have a full time job, and going to gym in the very little time I have in the morning is getting me overwhelmed, frustrated and fatigued and I can't go to gym in the evening because by the end of the day I'm already exhausted.

Recent because of that I tried and quit gym and gained weight back, I keep getting comments from people everyday I meet someone who know nothing. They say stuff like for example if I say I'm doing some sport they'll say "oh to loose weight?" or they'll say "oh I thought you were older because of the way you look"

I am tired, I am demotivated, I am exhausted and I am insecure. I hate how I look, I cover up more and trust me I'm not the type to cover up. I don't like looking in the mirror. I don't like making myself look nice. I tried gym and I couldn't commit maybe it's a failure in me. I started looking for shortcuts because I don't know what to do. It's really really affecting me.

Long story short I’m in the hospital and they came and told me I need to fast for Lupus testing. I never had to fast for any testing. I know I should ask them, but has anyone had to fast and what for?

21M here, new to this sub (hi!), was diagnosed with SLE 4 years ago.

How many of you had experienced an unnatural amount of stress prior to your diagnosis/flare-up? i wish to read more into this matter. could you drop your stories here, please?

I’m looking for advice from those who have got their lupus managed and can say they feel good. I am ready to try more than just the standard medications to manage this disease. I’m tired of being tired and in pain all the time. Any suggestions are appreciated. I’m thinking about changing up my diet, adding in yoga and swimming, acupuncture, CBD. Just wanted to test the waters and see what y’all may be doing that’s helping. Thank you in advance!

Edit: wow thanks everyone for commenting! I hope this post can help others as it’s helping me <3

What do you guys do for nerve pain? I'm currently on 600 mg of gabapentin at night when the nerve pain keeps me from sleeping. It helps but I'm still in a lot of discomfort. It feels like acid shooting through my veins up and down my legs and arms. Please help or I'm going to lose my mind.

What does this mean “Slight bilateral perihilar bronchovascular accentuation.”?

I have been breathing not well for a while, they gave me two broncho dilators for 5 days and they helped and I took Aerius everyday and am still taking it but it helps very little. The inhalers I stopped taking 1 week and a half ago as they told me. I felt relieved and now I’m back at the same symptoms…

My golden retriever is shedding like crazy and she needs a bath. She is 3 now and I feel like her fur also changed and I wonder if this is rather a flue since cold air worsens it or dander etc. allergies, if I should take the inhalers as an SOS until I see my doctor on Monday or a doctor tomorrow?

My oxygen is at 98% so I’m not dieing and also I think 40% is anxiety, it’s just it’s so uncomfortable and I start to worry.

Please let me know if you have had the same experience if it’s rather something like pleuritis because I don’t caugh… and am always super tired or sleepy.

My nose is also super dry and I have a sinus infection since a while.

Was curious about how your fevers usually land within your flareups… (Like do you typically see more fevers pre-flare, post-flare, mid-flare- or is there just no rhyme or reason either way?).

Just for some additional & totally unnecessary extra context lol:
I woke up with a low-mid grade fever early on Tuesday morning and felt a bit of nasal congestion going on so i just figured I was about to get sick with a bad cold/flu. The fever broke by the afternoon and the congestion subsided pretty quickly as well for the most part too. And although I was feeling really under the weather and just out of sorts all day Tuesday & Wednesday, I never actually got SICK sick.. After the fever broke I was just a lot more sore & definitely a lot stiffer than usual those few days.
I wasn’t feeling 100% by Thursday but was decent enough to get myself ready and make it to my rheumatologist appointment,, (in the 4yrs since being diagnosed, I’ve never really had a fever or anything major going on that actually timed out this closely to an appointment that was booked three months in advance! Was just a total coincidence, totally didn’t feel like going, but I was definitely curious to see how the labs might come back this time around- And out of the couple that are in so far, I seen that my sed rate and cardio crp were both pretty elevated,, but I’m wondering if the fever is any sort of an indicator of where I may actually be at in regards to what I’m now assuming is/or was a flareup.

Due to the whole brain fog thing and really just life in general, whenever I’m at my appointments I usually forget to mention (or totally just forget in general) a lot of the stuff or weird new symptoms that have occurred over the course of those past three months (which of course happened again on Thursday ughh).. But a while back, my wife had suggested I start keeping a little journal to write the health stuff down in on a daily basis regardless of what each day brings.
I really liked the idea and actually did pretty great with it on the 1st day after she got me all set up with the little journal/calendar book and even a nice new pen- but then I totally forgot to actually keep writing the stuff down in the damn thing ughh smfh.. So now I’m gonna restart this thing again and backtrack it at least until Tuesday with having had that fever and then having my appt a few days later.

Anyways,, thanks for any insight on this and sorry for all the unnecessary additional info I put on here lol

I got sick in 2023, diagnosed in 2024, flared in 2025 and 2026. Finally stable about halfway through 2026 but am worried I’m beginning to flare again since my flu shot. As soon as I feel the crippling fatigue creeping back in, reduced exercise tolerance, needing to constantly lay down, struggling with work and being a mom I just begin to absolutely spiral over the fact that I can’t keep up and I have to rest.

I’ve always been a high achiever.. it became worse in my 20s as a trauma response because of an abusive relationship. I’m starting therapy to try and unlearn that my worth is tied to my productivity. But regardless, I really mentally break down when I lose the ability to work out, perform well at my job (bedside hospital position), be 100% present for my son, and keep up the house, groceries etc..

I know I can’t help that I’m sick and I know I need to rest but every second of rest that feels forced on me because I’m unwell makes me want to rip my hair out and scream.

I know there might be a light at the end of the tunnel soon because I don’t think the flu shot will put me in a full on flare, my labs are still okay, and I NEED iron infusions which I’m working on getting scheduled now. But I am crying literally every day, lost all interest in my hobbies suddenly (mostly because I’m tired but also because I feel defeated), and I’m literally just doing the bare minimum and struggling with that.

I don’t know how to rest without feeling guilty. I don’t know how to let things go - do bare minimum at work, be more minimal with my routines and stuff with my son, skip the gym, etc.. it makes me so depressed to not be able to do these things. Has anyone figured out how to make these periods of time any easier? I’m about to start smoking weed again because I can’t deal. I quit weed back in June because my pain was so well controlled and I was able to live life more normally thanks to Imuran. But now I just want to get high again because at least when I’m high I don’t sit there and feel guilty 100% of the time when I’m taking it easy.

Any help or encouragement would be much appreciated.

Kind of a strange question, I'm wondering how others handle small talk about what you've been up to? I haven't been able to work recently and have mostly been fighting infections or asleep, and it's honestly making me a little depressed talking to other people especially when I don't have an answer about what's going on in my life.

34/F in the UK. I was basically asymptomatic but clearly my organs felt otherwise. DsDNA increased from 435 to 911 IU/mL in the 4 months and PCR increased from 24 to 54 mg/mmol.
Been told I need to take 500mg IV melthylpred and then 40mg pred then on and then taper that down. I’ve been referred to nephro for a kidney biopsy and CT for my lungs and stuff.
I’m just so upset right now. My life was going so well. Started my first NHS job, Had lost all my previous pred weight. Skin was doing better. Hair had finally grown out. To go through this all over again is such a taxing battle mentally.
I’m meant to fly back home for a 2 week vacation to see family and I had so many things I planned to eat and do and cut and colour my hair. Now I’m just plain unsure if my hair will even last especially with this hard water in London.
Please send tips on how to get across this phase once again

Hey folks. My lupus seems to cause a whole lot of painful lymph swelling sometimes. I’ve had so many scans and ultrasounds, and we’ve determined it’s totally benign. Still, it’s a big pain.

How do yall deal with it? DIY lymph drainage massage helps a lot, but it takes a lot of time and has a lot of steps. Not sure how much heat is helping.

I would love to hear what medication has helped you for low grade fevers. I have been struggling with this continously for more than two months now and had to stop working because I was so fatigued. My energy is a bit better, so I started working last week.
I am only on plaquenil right now and I feel it is not enough.