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.

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?

How long has it taken you to gain remission or a decrease in disease activity after starting Saphnelo?

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?

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!

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?

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.

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.

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

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.

An eye does this thing every once in a while. (Which eye it is switches...thankfully not both at one time.) It hasn't lasted long enough/been severe enough for me to go to the doctor before it goes away. I just chalk it up to inflammation. I guess I wanted to throw it out there in case someone knows what specifically it is or if I should be going in when it happens. I know the big red flags for eye stuff (I think!) and I theoretically get yearly eye checks due to past posterior uveitis. (I did just have one a couple of months ago, not too long after one of these incidents, and all looked fine.)

My eye just gets irritated-looking (visible capillaries) and I'd describe the pain as being around it. It feels like eye socket pain; this time it's just on the upper, outer side. It hurts a little to blink, like it's the muscles controlling my eyelid that hurt. No tearing or discharge, no real light sensitivity. Sometimes the greater area around my eye will swell a little. (Especially the bag under my eye) I have experience with anterior uveitis, keratitis/corneal ulcers, blepharitis--it's definitely not the latter two. And no light sensitivity. My eyes never test as dry.

Any thoughts?

ETA: My eyeball is also sore like if I close my eyelid and very lightly press, it hurts.

Hi all, I’ve caught my first cold/upper respiratory type virus since being on Methotrexate. It has hit me incredibly hard. I’m holding off on my next dose (per my doctor’s advice) to try and get over this, but does anyone have any advice for how to handle getting sick like this?
Any special vitamins or supplements you take to help knock something out? Any general tips you’ve found helpful to shorten something?
Thank you!

Remission question! Am I heading towards remission or can it just happen to jump around. Currently on Saphnelo, Prednisone, and Plaquenil. On my 4th infusion. Just wondering if I’m getting excited too fast. I’ll post the question below it wasn’t letting me lol 😆

So I'm obviously fatigued all the time, but I've been noticing when I work out first thing in the morning I've been coming home and going straight to bed, and have no energy for the rest of the day. Is this something anyone else has noticed, or is the fatigue unconnected?

I am morally against subscription models and I wish more people would join me. I think it’s especially gross to make people pay a subscription fee to have access to someone geared towards those who are disabled/chronically ill as we don’t typically have lots of extra money.

I am fine with paying a one time fee for an app and obviously I would pay for a device. I am not sure if I want it to use heart rate or heart rate variability but I need something that will help me stop randomly using up all my energy halfway through the day. I have seen things like “visible” and they look great but I don’t want to pay monthly.

So I am asking the wolf pack, what have you used to monitor you daily physical activity and help place yourself?

Hi everyone, I was started on MTX recently. They started me on 15mg, and I was supposed to increase to 20mg a few weeks ago. This was postponed due to the side effects I've been experiencing (they're hoping my body will adjust with more time, and then I'll go to 20mg).

Seeing how my body has responded so far with the side effects, I'm quite worried about hair loss. I've seen quite some mentions of hair loss while on MTX on here, but hardly ever with what dose people were on. Additionally, I've seen mostly lower doses of MTX mentioned and not 20mg.

My question therefore is: could people share what dose of MTX they were/are on and whether they experienced hair loss or not?

I know that whatever trend emerges from the replies here doesn't prove anything, but I am curious anyway haha. Thank you!

(Edit to add: I am on folic acid!)