r/lupus

Well this is going to be a very long one. But I want everyone to know about the experience, and if someone's struggling with the same, I want them to know it's not always all bad. I'm posting this because when I was freaking out about surgery, I mostly found horror stories online. So if you're currently staring at an AVN diagnosis, with lupus and panicking, here's one person's experience that actually went okay. 22 F here. Diagnosed with SLE, lupus nephritis class V two years ago exactly in August 2024.

Been in remission since one and half years. Here to vent/share my hospital experience for bilateral hip AVN. That was caused by my long term usage of obviously...pred. 🙄

After a whole year of groin and outer hip pain, and three doctors diagnosing me with "it's just a muscle girl" I finally found a doctor who actually touched my hip and did rotations, asked for an x-ray and gave me the diagnosis. And I immediately called my nephro. Told him about the situation. And asked him if I should consult in the same hospital for ortho. He told me to go for it. Their orthopaedics department is really good. I was a little skeptical because it's always so busy. And sometimes, in too busy hospitals you might not get proper care. And with lupus, you really need someone who's careful and actually understands lupus is an unpredictable disease. Right? Yeah. So I went, and met with one of the orthos. Actually asked my nephro who's the best in their hospital for this. Dude just said, anyone is fine. (Thanks for helping. A lot😭✋🏽)So I picked a random doc cause his name sounded good💀i mean like what was i supposed to do? I don't know anyone who got anything ortho related done in the hospital personally 🙂first visit, everything is positive. He really asked me details. About everything, and didn't just dismiss lupus like a lot of other doctors do, who say....oh that's not related to lupus. It's just your body doing random things. (It's absolutely related) I really did ask him if he can do something about this or should I consult rheum. He said he'd do it. And with proper care. Rheum people are not the ones who treat AVN.

Prior to him I did visit a different doc from a different hospital to get myself MRI and X rays done cause this hospital is busy and it could take ages to get those done here. This other hospital ortho, scared me really bad saying it won't work, we'll do one leg at a time, you'll need four months of bed rest and a month in hospital and I was like...say no more. I'm never stepping foot into your hospital again💀but this new doctor, he was weirdly confident this will work. He never gave me a 100% success rate, but at least he wasn't saying things like this won't work and demotivate me. A week later, I got admitted to the hospital. He consulted with my nephro for pre op protocol. Nephro asked him to stop MMF for three days. That's fine. He told me to stay admitted for three days, with IV steroid coverage that wasn't prednisone.

And cue the medical drama. This was really something out of a medical drama series💀 anaesthesia docs, who had to be involved started it. They told the ortho bros to get a second opinion from the rheumatology and immunology dept. And then they entered the picture. And they were just like...YOU HAVE BEEN TO THIS HOSPITAL FOR TWO YEARS AND NEVER BOTHERED TO VISIT US. MA'AM? 😭

and I'm just sitting there like...I only have problems with my kidneys nothing else. I promise😭✋🏽and they did like 20 other blood tests. By this time my mmf was already banned for four days. And surprisingly, all the tests came out... considerably normal. Nothing serious or nothing that suggests a flare. And immunology people were a little shook. They had to repeat the tests🚶🏽‍♀️and same result. Again. Meanwhile I was being pricked 20 times a day. I had to tell them to take a liter of my blood instead all at once so they'll stop pricking me. 😭(That didn't work. Obviously.) And then came the final boss of my lupus tests. UPCR. and what happens? The upcr turns out to be....ZERO. VALUE SO LOW IT CAN'T BE STUDIED OR GIVEN A NUMERAL RATIO BY THE LABS.

I thought, okay everything is good. I'm going to the OT tomorrow. But immunology people didn't leave it at that. They made the three day ban from mmf by my nephro, to a week ban 🙂 and my whole ortho department was disappointed. By this time, my stay in hospital was very useful to them cause they enrolled me into a case study of theirs, did a medical presentation on me, for which I had to be present and I was actually having a nice time in the hospital with everyone. And then immunology people enrolled me into another case study of theirs and wanted everything of my samples again. Yeah sure prick me twenty more times and take my pee😭✋🏽so anyways, a week later, again. All tests. And markers. Nothing concerning. And in the meanwhile ortho dept was beefing with anaesthesia dept cause they were just involving more and more departments and were delaying the surgery😂I even heard them beef in my OT room 😭 when I was getting my spinal anaesthesia. So anyways, after all that, I just got my surgery done yesterday. The pain at the surgical site is moderate. They operated on both legs at once. No bullshit of coming back again for another leg. Ortho said he doesn't want to put me through these two times. Recovery might be a little hard but this is better for my situation. Right now, I'm lying in my hospital bed and posting this. No flare. None. Thank you lupus? For deciding to sit this one out🤣I hope there will be no flare through this whole recovery process too. Pain is moderate in the surgical site, but what really hurt was the bone graft site in my calf where they took a piece of my healthy bone to fill up the drilled holes in my hip. I'm apparently not allowed to move around for the first two days, but I'm okay.

So, if anyone's suffering with the same issue, please don't let my experience, or the horror stories you read online...scare you away from discussing surgery with your ortho. And god forbid please don't read the avn subreddit 😭✋🏽learnt from my mistakes. I was almost ready to not to get it done. But then again somehow I made up my mind. Pred sucks. Thank you for coming to my ted talk. It is really nice to vent somewhere where everyone gets me 😂 Lots of love to y'all. 🤍

I want to ask for some time off of work to regroup and help with some of my fatigue but I’m afraid she’s going to say no lol . How did you guys go about asking?

I over did it last week physically, Sunday and Monday had pretty intense fatigue, Tuesday I had TERRIBLE anxiety and depression, almost had some panic attacks.
Now today I’m back to normal, anyone else get anxiety or depression with their flares? This was a first for me.

Had itchy ears for a bit but thought it was my skincare. Then my joints started hurting and never went away. Officially diagnosed today and scared. Lupus was always one of my biggest fears bc of how I saw others affected by it :( but we move!

Just got diagnosed today after doing a bunch of testing trying to figure out what’s wrong with my legs, came back with 2 indicating antibodies, some other results that point to lupus and have most of the other symptoms. I have to do more research but want to avoid going down a fear mongering rabbit hole right now. What are some things I should keep in mind to prolong it from getting worse?

Just curious if quitting your job made anyone’s lupus better (I assume, due to having less stress)?

My current job is remote and part time so admittedly not TOO stressful, but I know there’s at least some stress just from needing to deal with people and problem solve in general.

I have an opportunity to quit my job (but it’s been a super tough decision as there are of course pros and cons) and I was wondering if my lupus improving may be a pro!

I have Lupus, Chilblains, and Raynaud’s. Diagnosed in 2012 and wasn’t regularly seeing a rheumatologist until last year.

Today at my quarterly rheumatologist visit, she wants to start me on Mycophenolate. She says that it should improve my daily life and remove the need to occasionally take Prednisone. She even mentioned that it will make me less photosensitive to light! 🤞🏼

Who else is on Mycophenolate and how has it helped you? What has your experience been like? I’m really hoping for some positive stories so I can feel like I’m doing the right thing.

I have been diagnosed with SLE for 6yrs Now. I had a constant backpain, right side stomach pain , leg pain. I have gone to the ER dozen of times. Because my doctors always said the can't really help. and even with the ER visit they still can't find what going on. Anytime I go to the doctors and they ask do you have any pain, I say no. Unless it is a new part of my body. But I'm tired of this unknown 😔. Now I'm flaring up like a volcano. my family members don't want to understand. My job doesn't even want to hear it. My doctors take 5 months to get back to me. The world feels very lonely.

So i was switched to Myfortic for my nephritis because MMF caused some pretty bad GI issues. My rheum also ordered a gastroscopy for me which i did on Monday and it showed i had gastritis and the endoscopist prescribed me famotidine to take before bed to help my stomach heal. Since that gastroscopy i have literally had two of the worst nights ive had in a long time. The first night i just could not sleep at all and last night while i did eventually manage to fall asleep around 3am it was like my body was so stressed out and restless that sleeping felt like it was going to be impossible. Even as i woke up today that tension has not gone away at all and its like my muscles are too tense to relax and its majorly uncomfortable. Has anyone else experienced this and if so what can i do to combat it? Its only been two nights of bad sleep and im at my wits end. While the bad sleep is nothing new even before i was diagnosed, this discomfort is a new thing for me.

Does anyone have any experience with Saphnelo infusions? I saw my rheumatologist today and he informed me that he would be taking me off of one of my medications (Azathioprine), because I’m not a ‘good candidate’ for it. Which was kind of shocking because I’ve been on it for 8 years now and this is the first time I’m hearing of it. That medication is being replaced with a Saphnelo infusion. I’m absolutely terrified having heard that. Does anyone have experience with this medication?

(Update: Thank you. Seriously. You all made me really glad I posted here yesterday. This is the first time I've ever posted since finding out about all this back in May. Reading your comments made me feel fully understood and seen for the first time since I got sick back in 2022. While I wish we all didn't have to suffer, you all made me feel so much less alone. I was able to get crisis support from my therapist and called my rhumetologist for a sooner appointment so we can discuss symptom relief (she's calling back today). I am going to try to do some art today to remind myself that there are ways I can still get my creative outlet, even if it's at a slower pace.)

I was diagnosed by my rhum with SLE back in May of this year after being debilitatingly sick since 2022. I started Plaquenil in June. At first I had some noticable steady improvements and was able to live life a little more (and I truly mean just a little bit more), but I feel I've hit a plateau as of a couple weeks ago. While I'm not as sick as I was (eg not having nightly fever, and my malar rash isn't getting triggered) I still can't do the things I love. Before I got sick I was making so much art, growing my career, and experiencing so many wonderful things with people I love. Now I am trapped in my house because my body doesn't have the energy to leave.

Since my diagnosis I've also tried other methods in treating symptoms, which my largest is exhaustion and secondary is pain. I've changed my diet around to be anti inflammatory, started taking b and d vitamins, no alcohol, cut sugars out, etc etc. None of it has been enough to not be glued to a chair, bed or couch in my waking hours.

My symptoms are destroying my life, and truth be told I'm becoming very depressed. I have become incredibly isolated since most days I don't even feel like I have enough energy to respond to a text message. If I see friends, which I rarely leave my home, I can stay for 1-2 hours maximum. Maintaining a conversation even at home in person is even exhausting. I just feel so very very alone.

I feel like my life is passing me by day after day. I feel like I'm slowly being forgotten about by my friends the longer I have this disease. I am losing hope and it's been incredibly crushing. I have been crying since I woke up this morning because I desperately don't want this to be what every day looks like for the rest of my life. Waking up, being sedentary, then going back to sleep. Day after day. Alone.

I wanted to ask those who have been living with this disease for sometime: does it get better? Can I have hope that it will? Is there anything that helps with this crushing fatigue? I have another appointment with my rhumetologist next month, but does this warrant me reaching out early?

Any insight would be so very helpful.

Hello!
I am 26 yo and I have been diagnosed yesterday with lupus following a skin biopsy and months of trying to figure out what was wrong with the skin on my face. For now the diagnosis is SCLE and I have started hydroxchloroquine as well as cortisone to calm the rashes. I have an appointment in three months to see if the treatment has helped and to further look into my other symptoms (random fever, extreme fatigue, anemia, bruising, a lot of pain especially in my hips knees and legs overall…) with more testing to maybe diagnose or rule out systemic lupus. During those months of not knowing what my skin was doing I had to stop wearing any make up, using any cream or skin care (doctors thought I had eczema then a fungus infection until I could finally see a dermatologist who listened to all the symptoms I’ve had for years and not only focused on my skin). I really enjoy putting make up on, taking care of myself with skincare and such and it has been a little difficult to stop everything during those months. The doctor told me that I was allowed to put make up on and apply skincare but only with good products. I also have lost my hair on a patch I have on my hairline it looks a little goofy but I have been told it will eventually grow back once this inflammation is gone.
So I was wondering if there were any make up products that you would recommend, as well as skin care products (I live in France and I’m kinda broke). Not really knowing much about lupus yet I was thinking that Selena Gomez brand would be nice since she based her initial advertisement campaign on having lupus but I’m not sure.
It is a little difficult to process all the information I’m reading everywhere on the internet, especially since I won’t know until November which type of lupus I have for sure, but I would be really grateful to acquire some advice, ideas and such from people who have the same condition!

Started this journey officially in Nov of 2024, went on Plaquenil in June of 2025. It definitely has helped -- but I've had a series of flares this last month or so and am trying to decide if it is worth seeking a second opinion or if my expectations are mis-aligned.

My current rheumatologist seems to go strongly off lab work - which I have no organ involvement, so my labs are "ok" - but also am not super functional when flaring (sleeping a ton, joint aches are horrible)

I actually got a Lupus diagnosis last spring (positive antiDSDNA, it's been truly positive twice now, indeterminate the other times tested). C4 has been consistently low over the last year. My anticentromere B antibodies are also high - not sure if that is complicating things from a diagnostic perspective. Last March he diagnosed (and charted) Lupus, when I saw him again in October and antiDSDNA was back to indeterminate, he went back to undifferentiated.

The biggest struggle I am having is he is very conservative with medication - which I dont necessarily disagree with, but also, quality of life has to count for something also? I have twice now gotten a steroid dose pack when in a flare from my PCP which has seemed to help - but the first time it happened I reached out to the Rheumatologist and was basically told - your symptoms all could be viral, so *shrug* (I was exhausted, low grade fever, body aches, just felt like I got hit by a bus. negative for covid and no respiratory symptoms. Blood work that time showed low WBCs for the first and only time as well).

Does your rheum offer options when you are flaring like steroids or should I expect to need to go to PCP? Should I be thinking about other long term medication options/more aggressive treatment? or does the lack of organ involvement mean I'm just sorta stuck here?

hi y’all! i am not diagnosed with lupus but a beloved friend of mine is. we are long distance/online friends and I’m seeing her soon. i want to give her a gift (maybe make her a gift? i’m a knitter/crocheter!) but I’m unfamiliar with what would be best for those with lupus. i tried looking here but a lot of the gifts didn’t quite fit because she lives in a warm/hot climate with lots of sun and the ideas seemed warm. if you were her, what would best help you in that environment? thank you so much for considering and helping me support my friend (sorry if this seems weird lol, i always feel like i’m writing an email when i make a post)!!

I got diagnosed at 17 years with lupus. But in 3 years I haven't had a flare up. I take all the tests once in a month. Now im confused.

Feeling a bit down. I’ve been on prednisone since shortly before my diagnosis 8 years ago, mostly at a 5mg maintenance dose. Started flaring on the 16th and I upped my prednisone to 10mg. This usually settles things down and I can taper back to 5mg a week later. This one is being stubborn. Woke up today feeling like I did a full body workout at the gym and everything just hurts. I emailed my rheum to loop her in and have it noted in my file if I ever need to go on disability. She said to bump to 15 for a few days and then 20 if things don’t settle. I’m frustrated. I’ve been on holidays the last week and a half and haven’t been able to do much of anything for the majority of it.

I’m fine being on prednisone because it helps me function in life, but it always feels like such a set back when I have to bump higher than 10. I also haven’t had a flare like this in quite a while. I’m grateful things have been good but a flare just sometimes jolts me into the reality of having Lupus (if that makes sense).

Got diagnosed last June, I’ve done construction my whole life.. now I can’t get sun and my body just doesn’t recover like it used to.
I can’t go be a cashier or something along those lines because of how low the wage is.. what am I supposed to do? I need money to live. I’ve made good money my whole life, now I can’t because of lupus. I don’t know what to do… any advice or comments would help.

I’ve thought about disability but I got denied

I cant seem to find much about arava here for mctd/lupus. Switching from methotrexate after dealing with extreme itchiness from the shots. Any have any experience with this drug? Im definitely gonna do some googling for the side effects an what not but I feel like they don't anyways have the full picture or something close.

I have had a pretty decent couple of weeks FINALLY. I have been struggling for so long but my current combo of medications is really starting to help. I'm currently on Plaquenil (400 mg), Benlysta weekly injections, Imuran (100 mg), Cellcept (1,500 mg) and prednisone (5 mg). The addition of Cellcept wasn't a typical addition given I'm on Imuran but it has really made a huge difference. I get labs and my regular urinalysis done in a couple of weeks. Wish me luck.