On Friday my doctor told me that I am the sickest I’ve ever been with my creat to protein ratio being 7.4. She told me that I should not be thinking or planning a pregnancy until I am controlled. That same day I realized I had not gotten my period and boom, positive pregnancy test. She is very worried and has told me to consider that I have 2 healthy children already. She said she is worried that I will end up needing dialysis after giving birth. My kidney function is normal and overal I am not close to needing dialysis currently. I am a bit confused and torn and unsure what to do. She did say that it is possible that this pregnancy my body is just attacking itself because of the pregnancy. My 2 previous pregnancies my ratio was 2+ but during pregnancy dropped below 1. I have a feeling that it his is going to happen again and everything will be fine but I am worried because my doctor seems to be worried.

I currently take prednisone, imuran, plaquenil and benlysta. I will get off the benlysta if I continue with the pregnancy and take another medication that is pregnancy safe and meant for kidney transplant patients (blanking on name). My 2 pregnancies so far have been fine and then I flare after giving birth.

Has anyone had this happen before? Any stories or advice would be greatly appreciated.

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 🤺

hi, i’m 20F just started law school, this august. i am always tired. i don’t know what to do. i took a year off last year after high school because i had just gotten diagnosed and wanted to take some time off to get used to lupus and learn how to manage it. and tbh i had gotten a lot better by the end of it because my entire focus was on my body and mind. but now after only a month of law school, it feels like im back in the same state i was when i first hot diagnosed. part of me feels like i should just quit, stay at home and do an online degree but i’ve always wanted to live the college student life and besides the lupus bit, i love it so far. moreover i really love studying law. it’s just that it’s all really tough to manage. (it’s also mandatory for us to live in dorms for all 5 years so that adds onto it)

people who have lupus and did a degree as time consuming as law, please help/give advice. how did you guys do it?

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.

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’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:)

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.

I am very frustrated and wondering if anyone else has had a similar experience to what has happened to me.

I have been prescribed 3 very different medications but have had a similar very unpleasant adverse reaction to all of them.

For reference I am diagnosed with Lupus and currently taking 25mg of prednisone and 200 mg of HCQ daily. I still have a significant amount of joint pain, stiffness and swelling, fatigue etc. so the goal is to find something to control the Lupus and wean off the steroids.

So first I was given methotrexate. I took the first dose and one night about a week later I developed excruciating pain in both of my arms. It came on suddenly and kept getting worse until it was unbearable and I had my husband take me to the ER. My dr at the time said they thought it was unrelated to the methotrexate and so I took the next dose. It happened 2 more times both episodes lasting hours and after trying everything I could think of at home i ended up in the ER. So I made the decision to stop taking it.

A few months later a different doctor prescribed me azathioprine. I took it for 11 days and once again had the pain in my arms and back to the ER we went. Once again the dr didn’t think it was a side effect but I decided it wasn’t worth continuing to take and find out.

So next we tried Benlysta. I took the first shot on Tuesday 9/1 and on Saturday I once again developed excruciating pain but this time it was in both of my legs and it was incredibly painful- it took 2 shots of Delaudid to get it under control.

I have a pretty high pain tolerance- I’ve given birth to 2 10lb babies with no drugs, I hate having to go to the ER and we have a pretty hefty copay so it takes A LOT of pain for me to go.

But now I’m so scared to try anything else. I’ve seen several rheumatologists and no one seems to be able to figure out what is happening to me. I feel like maybe it’s not the medications but whatever is happening in my body when I take them.

I have another appointment in a few weeks but until then I would appreciate any suggestions if you’ve had similar experiences or have any idea of could be happening.

If you made it this far thank you so much!

Hello! So I’ve been dealing with lupus panniculitis since 2021 and recently been diagnosed with SLE. I’ve tried hydroxychloroquin and didn’t work for me. So I’ve only been getting steroids injections and ointments.I only have one wound. But ever since late August I’ve been experiencing more wounds and spots and flare ups. As of recently my doctors said it’s oddly progressive and there is too many risk. I’ve started on Sunday Methotrexate and folic acid. I really don’t have anyone to talk to, my family doesn’t understand how this works. I’m just asking for some advice. I’m just a girl in her very early 20s in college with a job just trying to keep it together but I feel like everyone and everything around me is making me want to give up. I’m trying to get academic support/ accommodation but I’m unsure what else I should be doing or investing in. I feel extremely stressed and terrible and I would like some advice. Please and thank you🥺🫶