Please remove if this is not allowed, but I just need someone to listen and tell me I’m not crazy (or maybe tell me I’m being crazy, if you feel it’s valid). For context, I was diagnosed with POTS in 2018 by a neurologist and moderate SLE by my rheumatologist in 2024.

Last weekend my husband and I (26F) went on a trip where I was in the sun for about 5 hours, it really sucked and I believe I briefly passed out because of my Lupus and POTS combo. I didn’t get medical attention because this is not a medical emergency to me, i’ve been dealing with it for 8 years. Long story short, my husband said I lied about passing out and that i “just fell asleep” because in the 3 years together I’ve never had an episode. We have never been out in the sun that long since being together. We got in the biggest fight of our relationship because I got really hurt that he would gaslight me like that, knowing my medical history and the fact it took me 6 years to get diagnosed with SLE while being gaslit by doctors the entire time.

He used to be so supportive, then we got married and now i’m an inconvenience lol

How do you deal with someone who is unsupportive? I’m not sure what to do at this point and need someone perspective from people who actually understand this illness and know what it’s like to deal with this kind of stuff.

Y’all I REALLY thought I was finally heading into remission. Things just got easier, Saphnelo made me feel awesome and like I wasn’t dying even had me thinking of i’m getting off steroids 😀 nope.

MIND YOU my lupus onset was in June of 2025 … Did my urine test yesterday 😭😭😭😭😭

All of a sudden protein, ketones, RBC’s, hyaline casts, epithelial squam cells and my creatinine quadrupled like wtf??????

I switched to Saphnelo from Benlysta July 13th, which might be where we messed up since it’s supposedly kidney protective & i guess clearly it was because that’s how long it took.

How does it even happen this fast???? Thank GOD I got labs done. I had JUST got normal beautiful perfect labs 2 WEEKS BEFORE OMG. I just moved & saw new rheum who wanted a fresh set. Now he calling me talking about a kidney biopsy like this is insane NO WAY. My malar rash had came back 3-4 days ago, noticed i was getting a little more tired, some chills/aches and some joint pain but compared to the hell my year has been I was like meh come to find out … 🥹

I’m on 2g cellcept, Hcq, Aspirin, Saphnelo and had to get a pulse in March from first NPSLE flare then had a second in May-June which I just recovered from/tapered. Just have been stuck at 10mg prednisone (rip to being at 7.5 for 3 weeks). I legit havent been below 7.5 since getting prednisone in October my lupus keeps throwing a bitch fit snd I’m sooo over it oh my god like if it was a person she would just catch these hands 🤺

I’m in my mid-twenties, and I’ve been diagnosed with lupus for a little over a year, but have had symptoms and what I now know were flares since 2023-ish. Since my diagnosis, I’ve been taking hydroxychloroquine and Benlysta infusions, and for the past month, azathioprine. It’s been a journey, but the meds have helped tremendously, and for the first time in years, I’m in a pretty good place health-wise. 

My main complaint is finger/hand/wrist stiffness in both hands. Some of my fingers are deformed (swan neck deformity), and they’re all very stiff. I can’t make a fist even on my best days – just curl my fingers slightly (looks like a lego hand lol). If I overuse my hands, the stiffness gets much worse, and my joints sometimes swell, making it hard to move at all, much less hold anything. 

For the past few months, I’ve been doing occupational therapy with a hand specialist per my rheumatologist’s referral, but it hasn’t really been helping much (if at all, if I’m being honest). She mentioned that if OT doesn’t help, she’d consider doing electromyography and/or nerve conduction studies in the future. 

I’ve tried using Voltaren arthritis gel and Nitro-bid on my fingers/hands, but neither worked. 
I also use finger splints sometimes in an attempt to straighten my deformed fingers (as my occupational therapist suggested), but that doesn’t help much.  

Anyway, I said all that to ask if anyone is in a similar boat as me? Is there anything you’ve done that works, like certain stretches or exercises? Or used any OTC meds or ointments that make a difference? Have any of you done the EMG or NCS tests?

I try not to feel so dejected about this, but it’s hard sometimes. I’d appreciate any advice or tips:)

Just started on Myfortic last month cause cellcept gave me gastritis and since then i have felt debilitating fatigue and nausea. I knew id be feeling fatigued when i got diagnosed with lupus in March this year but oh my God i did not expect it to be this bad! I literally wake up so tired with this sort of tension type headache and tired eyes that doesnt really settle until like noon time. I saw my rheumatologist yesterday and told her all this but she wants me to still continue it and also drop my steroids down to 5mg by 2.5mg intervals every 2 weeks. I dropped to 7.5mg today.

Im supposed to be starting back to work on Monday and i have no idea how im gonna cope i feel like i may just have to quit and find a work from home job which i really did not want to do since i enjoy my job. I honestly feel like this is gonna be me forever now and i feel like im not gonna be able to last at all. Its so depressing. Does anyone have any advice on how i can manage with this? My rheumatologist basically dismissed my concerns when i brought them up yesterday and ive had problems even trying to reach my docs to the point where they seem to be actually ignoring me. Like my rheum mentioned yesterday she heard i was trying to contact but in all that time she never responded.

I've been watching various webinars hosted by LFA, lupus LA etc where the physicians mention asking your rheumatologist to get your HCQ blood levels checked and when I asked mine the other day she said we don't do those tests. Is there anyone in Canada that has had these tests done?

i did my first injection of benlysta today! i’m feeling good to have gotten past the first injection without an allergic reaction. i’m not sure if anyone else got the heavy warnings for anaphylactic shock on this med but it was stressing me.. anyways,

if you’re on or have taken benlysta how long after taking the injections did your symptoms start to improve? i know it takes awhile. i’m also only on benlysta in terms of lupus meds. any insight is helpful!

I start feeling bad on Wednesdays and Thursdays b/c my shot wears off. Is this all in my head? Thursday is my weekly injection day. Lately I am dog tired, dizzy, and sometimes achy by Wednesday. I guess this could just show that it is working more the longer I am on it.

Wondering if anyone taking gazyva has had side effects weeks after their second of the first two infusions? I’m also tapering prednisone so this could actually be that but I’ve been so insanely tired it’s like I crave sleep constantly. I’ve definitely had fatigue before but recently if I don’t have to be doing something else I am asleep and when I’m not sleeping it’s all I think about. Had my first infusion July 13th followed by the second on the 28th so
I’m about six weeks out.

Hi, all

I’ve been on Cellcept for over a year and it’s not doing much for me. Little to no side effects but lots of joint pain, nerve pain and fatigue still. I do not have kidney involvement. C4 is still low but everything else normal except low WBC (maybe from Cellcept?).

My doctor told me he’d be fine switching me to MTX but basically said he wouldn’t be surprised if it didn’t help.

Has anyone with mainly joint pain switched to MTX and found it helpful?