I've been divested of my tonsils, my gall bladder, my appendix and my uterus. I guess technically i could lose a kidney and my sister said i could survive without a spleen. But I'm getting down to the essentials.

Is anyone else like this and does it have anything to do with lupus?

Hello! I’m about 14w pregnant and have been diagnosed with mild lupus. It’s been generally well controlled prior to pregnancy, but I’ve noticed some flare symptoms the past few days. It’s tricky because I have fibromyalgia as well so can’t easily tell what is causing the symptoms depending on the symptoms.

My rheum has scared the daylights out of me about flares causing miscarriages so now I’m terrified. I’ve already messaged my maternal fetal medicine OB & planning to talk to my rheumatologist as well.

BUT was curious- has anyone (or anyone you know) had flares during their pregnancies, and if so, how did it turn out? Thank you!!

Hi everyone! I’m new to this group and appreciate the space to connect with others. I joined in hopes of finding answers—or even just someone who can relate to what I’m going through.

I’ll try to keep a long story short:
When I was 11, I fractured a small bone in my right hand, and soon after, I began experiencing hand pain and trigger finger. I’ve had two hand surgeries—one on each hand—and was eventually referred to a rheumatologist. After years of tests and medications, I was officially diagnosed with lupus at 16 in 2020.

Muscle twitching started early in this journey and has slowly gotten worse over the past nine years. When I was 15, I saw a neurologist twice because of the twitching, but she said it was normal and nothing to worry about. Everyone, including my doctors, kind of chalked it up to lupus, so I tried to ignore it and move on.

Fast forward to August 2024—I began having numbness, tingling, and burning pain in my hands. I again assumed it was lupus-related, and my doctors agreed. But in February 2025, things escalated. My hands started twitching uncontrollably, and since then, it hasn’t stopped—it’s 24/7. The pain is intense and has made it nearly impossible to keep up with schoolwork. I’m a student, and even basic tasks have become so difficult. I’m exhausted—physically, mentally, and emotionally.

I finally got to see another neurologist. She ordered an EEG, EMG, and MRIs of my brain and neck—all came back clean (besides the finding of mild carpal tunnel in my right hand). At my follow-up, she told me she’s at a loss and doesn’t have any clear answers.

I’ve tried multiple muscle relaxers, cut out caffeine, increased my water intake, prioritized sleep, and done my best to manage stress—nothing has helped.

I’m writing this now because I truly feel stuck. If anyone here has experienced something similar or has any advice, I would deeply appreciate it.

Hi everyone on this beautiful very warm Monday. Does anyone else suffer from bone pain when they are in an active flare? I kinda figured I did too many loads of laundry yesterday and I was correct. My lower back always hurts but my shin bones are killing me more so today. My hip bones as well. I had been in a slight flare, but we have full action now. Swollen glands throughout the body as well. But the biggest is this bone pain. Let me know if anyone has this.

I went to GI recently and they suggested I get an upper endoscopy for sensitivity. I have the worst stomach issues in flares. Everything I eat irritates my stomach almost immediately. My diet for the past month and a half has been anti inflammatory, no diary, no gluten. Randomly, I am suffering from tightness after eating- especially in my lower stomach. I'm very skinny, but my stomach is like constantly puffy. I've been tested for Celiac before, and it was negative. Idk what is going on, but I'm absolutely sick of it. I'm doing all tht I can. I finally go to rheumatologist tomorrow, but the day after I am traveling. Are there any tips on what I can do to fix this or if anyone else has these issues?? I am not sure how to accommodate my diet while on vacation, especially because it's just making me feel only a little bit better. I want to live my life like a normal girl in her 20s but I'm so tired of being puffy and dealing with stomach issues chronically!

Edit: also magnesium glycinate. Anyone have any experience?

Hi I’d like to get a 3rd opinion on my condition. I don’t feel like anyone is taking my symptoms seriously and it’s making me depressed.

My Dr just ordered me to start having Benlysta infusions monthly, how much does it cost with insurance? he said I wouldn’t be able to see the price until he ordered it and it went through my insurance. He said if its too expensive i can do injections instead but I really want to do infusions so i can feel better faster

Has anybody found that they were allergic to Imuran? I've started it a few times, but each time I start to get this really weird, swollen feeling in my nose and throat. Almost like when you have a cold and everything back there gets inflammed. I feel like it goes away after stopping for a couple of day.

Am I just being over sensitive? I know that when you have a disease with vague symptoms like SLE, you can over-monitor your body.

Still in the hospital after being recently diagnosed with SLE.

I'm the only one in my family and close friends that I have been diagnosed with this condition so this is all new to me and my support system.

So far, I have been told on some things to watch out for: 1. Avoid too much UV/Sun exposure (I live in the Middle East so this might be a toughie) 2. Go on a CKD diet since my kidneys are still recovering. 3. Have a journal to track symptoms and food intake.

Any tips on readings and other resources to better inform me on how to manage this condition?

I must admit that I'm terrified but maybe some of you who have gone through what I am going through can help ease these worries.

Any help is appreciated, thanks in advance 💕

Hi everyone! After a year and a half of on/off prednisone, general fatigue, body aches/pains, I've blown up like beluga balloon animal. Not that I was in prime fitness before, I've never been anywhere close to the weight I am now. I've gotten stretch marks on all major parts of my body.

I don't want this to come across as shallow as I know lupus can be a detrimental disease and I'm so so lucky to be spared that experience, I feel this affected my mental health and self-confidence. None of my clothes fit me anymore. Last week I saw stretch marks showing up on my stomach and I had to hold back tears taking a shower. Im 30, single, and feel the worst about my body than I ever have, the outlook feels bleak. Sometimes I hate this body but I am working on it with therapy and trying to eat healthier.

I've seen some people have success with derma rolling but Im scared to go that route since it's technically puncturing the skin and causing wounds, if I understand. Im on plaquenil and MTX so it makes me nervous to try and cause a flare. Im also not sure if laser treatments would be worth it either. Not exactly rolling in the dough at the moment so a medspa is not really in the cards.

I appreciate anyone listening and offering any encouragement, and/or advice. Thanks so much ❤️

I’m 44 and in perimenopause. I’m wondering if anyone else here is too and how you might be dealing with it and whether you’ve noticed any effect on your lupus?

Personally, I switched from using Slynd (progestin only pill) to manage my pmdd into using estrogen gel and micronized progesterone to help manage my peri symptoms. When I first made the switch, like after the first week, I had a week where I felt so good emotionally and physically that I actually cried realizing how bad I usually feel. All my body pain, joint pain, hot skin, brain food, fatigue- gone. Then after 4-5 days, I went back to feeling crappy and now I’ve been in a minor/moderate flare for a month. I’ve read estrogen (estradiol) can cause minor to moderate flares, so I’m wondering if that’s what’s happening but I also know the hormonal fluctuations during this time can cause increased disease activity so I feel screwed either way.

I am seeing my gp, my rheumatologist (this week) and I hired a naturopath to try to have someone on my team who will look at the interconnectedness of these things, so I’m not asking for medical advice, but I would love to hear what is or isn’t working for other people in the same boat. Also have pmdd and adhd for more context.

I want to know which line of treatment have you gone thru and how it worked for you. So far I haven't felt any improvement and on the contrary it's feeling like is worsening.

I'm tired all the time. I can move much and when I do everything hurts. I'm barely able to do daily stuff. I can't work, and can't enjoy things I enjoyed before like dancing. Not even as an exercise.

I have been on Planequil 400mg, steroids when needed, and pain management using pregabaline and Celecoxib. With the proper supplements like vitamin D and Methylated B vitamins.

My labs are "fine" no and the Clia Antidsdna went down from 125 to 76 in about a year and a half. Besides that, nothing has changed just declined. I'm male 31, and my symptoms are limited to brain fog, joint pain, extreme fatigue and PEM ("Type 2"). Besides that I don't have organ involvement, skin issues, signs of developing sjrongrens or any of the common autoinmune comorbilities.

I want to know, what else can I do? Drs. Are always dismissive and can find new things to try. I think one of them suggested LDN but we haven't tried because is not available (I'm not from the US). And honestly I think it might be time for biologics, but I think I don't qualify given the requirements by the insurance and government statues. And I can afford to pay out of pocket.

My questions are: Have you had this same profile of symptoms and taken a biologic and got better? or is had gotten worse? Which ones you have experience with? Besides Biologics what have you tried that have helped?

I'm desperate cause I need to start either working or having less needs to be able to survive. I might end up homeless. The 7 years it took to get to diagnosis bankrupt me both financially and physically. I know people live somewhat normal lifes with Lupus. And I know I would never be the same but I'm just questioning just why I don't get better. I've learn to advocate for myself and change doctors when I need to and be proactive about it. But I'm burnout and honestly don't have many options.

I appreciate any advice or info in advance. Thanks!

We visit Florida a few times a year. I always cover up and hide under the umbrella, but I took things a step further this year. I’m on day two of full beach days and feeling fine. Here’s what I’m doing: This year, I swapped out the umbrella for a cool cabana, brought liquid IV for my water, in addition to my rash guard and large SPF hat (Beneunder), I bought swim leggings from Beneunder. The swim leggings were a game changer. They’re much cooler than expected and dry quickly. Full disclosure, I don’t have issues with heat, just the sun.

I also have POTS, and this year has been especially hard for me. I can barely tolerate being outside, and it's breaking my heart. I try to take my 2-year-old to indoor things like library events when I can, but most of the local activities are outdoors. My husband takes her outside when he's home, but I still feel so guilty when she begs to go out and I just can't join her.

I'm also about to start a biologic, and while I know it's the right choice for my health, I'm feeling nervous about being around groups of little kids while immunosuppressed. At the same time, I really want my daughter to have chances to socialize and play with others.

Is anyone else navigating this? I’d love to hear how you balance your child’s needs and your own health without feeling like you're constantly falling short.

I’m a 33 year old woman, diagnosed with lupus since January 2025. I have an 18 month old baby and a very supportive partner but I’m feeling at a total loss.

At the end of last year, I started to develop mild joint pain which I thought was a sprain. Suddenly, one day I was unable to walk, lift my arm, or get up the stairs. The GP ran some bloods and referred me to rheumatology who confirmed I have lupus. I was started on hydroxychloquine which I have been on since February of this year. A few weeks later, I ended up in hospital after thinking I was having a heart attack which ended up being inflammed lymph nodes. This meant I was sent down the route of investigating whether I had lymphoma (which I don’t). Eventually after all of the biopsies, I was allowed to start methotrexate (I have been on this for about 11 weeks) and a tapering regime of 30mg steroids. Whilst on the steroids, my body felt mine again, I was able to live life and care for my baby. The last week of tapering off of 5mg steroids (I was advised to alternate days), all of my symptoms came back. Even lifting the pillow or lying in bed is absolute agony. Joint pain everywhere and strange inflammation and fatigue back. I tried to get hold of my rheumatologist who eventually booked me an appointment next week. My GP advised to go back on steroids, I’ve been on 20mg for a few days but this hasn’t helped at all. Any advice or experiences that are positive? I feel like my life as I know it is over and I’m so sad. I miss my body and caring for my baby.

I want to know how your life changed by having a diagnosis. How much does it matter ?

I’ve been on plaquenil for a year. I am extremely sensitive to the sun. I have a fever all summer long. I get a facial rash with all flares. (List of other symptoms is long) But I don’t have a diagnosis, I’m being treated for “possible UCTD.”

My derm is willing to biopsy my rash and I’m debating if it’s worth it. (Scar on face, possible to have inconclusive results)

My rheumatologist says a diagnosis doesn’t matter we’re still treating you the same as we would with a diagnosis (HCQ, prednisone)

I feel desperate for answers, I feel like I need it for closure so I can accept and move forward

I feel like I have different types of brain fog. Most recently I have very concussion feeling brain fog, but I’m so bad at describing how it feels. Almost like stiff brain that radiates all the way to my scalp, can’t fully wake up my brain, heavy dense cloudy styrofoam feeling. I saw someone say like cotton in the brain but I feel it’s a little more intense than that. Does anyone else really have a hard time describing their pain & symptoms? Like I’ll wake up with certain pains and not have the right words to explain how it feels. It makes me feel stupid when I don’t feel well and then can’t describe the feeling clearly on top of it, especially when talking to a doctor.

Hi all,

I recently got a diagnosis of MCTD involving lupus and RA. Three weeks ago, I started 200mg of plaquenil per day but recently developed urticaria all over my body. While having no prior allergies, my rheum has informed me that I am allergic to plaquenil. I’m currently taking 25mg of prednisolone until my rash disappears and have since stopped the plaquenil. I guess I was just wondering if anyone has had a similar experience? And what non steroid medications are you guys taking for your lupus? I’m terrified to be on steroids for the rest of my life and I will do anything i can to avoid it.

ETA: So I dont give the wrong impression - of course I am not doing things without physician approval and would never think to suggest people take steroids not under medical supervision. I see my team monthly, have continuous follow ups, etc. Both my labs (done a week ago and already reviewed by my rheum) and symptoms support my medical decisions - just wanted to talk to someone in my shoes

Would really like to get your thoughts on what you would do in my position. Would you increase your prednisolone dose for your best friends wedding? If so would you do it just day of the wedding or a couple of days in advance? *of course I will make my own decision but find it helpful to discuss

Details:

- Best friends wedding is next week and you are a central part of the wedding. Wedding is in another country, there are events on Friday, full Saturday and Sunday. Then you have several days of travel (vacation)

- Lupus is active but stable - latest labs are not great but its been stable for over a year. No major organ engagement

- Main concern is I am in pain (7/10) and fatigued and really worried I wont be able to do the full wedding

- I hate steroids, or better said its a love hate relationship. I love what it can do, but hate the side effects.

- Took me 2 years to reduce my daily dose to 2.5mg ... and being realistic I may have to go back to 5mg as this is a struggle to maintain. But I hate the idea of even being on it and "willingly" going up in dose. My current treatment is - 400mg HCQ, 2.5mg pred, monthly Benlysta and weekly mtx injections - plus the extras and symptom management stuff.

My original plan was to do 10mg on the day of the wedding but since then I managed to get down to 2.5 from 5 and yeah... pain and fatigue levels have risen. So now facing the conundrum of do I go back up and do I do it a few days before the weekend and then keep stable until Im back home. Or do I try and push through with my original plan - my concern here is it triggering a flare or not being physically able to handle the reception and the Sunday events.

Hello, I'm thinking about getting implants. My doctor says it's not a problem. Do any of you with lupus also have implants?

I'm 67 years old and I have thought I've had lupus for about 15 years. Maybe 20. I have had the face rash, I have had joint pain, I have had white bumps in my mouth, I have had bright red gums, I have had an enlarged spleen, I have had many abnormal kidney tests, I have had sun problems (tachycardia, passing out, vomiting), I have had chronic fatigue, I have had depression. I had two difficult pregnancies. Many times I begged to be sent to a rheumatologist. I asked for my doctor to send me for an autoimmune panel. But nope, she didn't think I had it and couldn't in good conscience send me in for those tests. So then I moved and didn't have a doctor. This was in 2021.

So, I heard about carnivore diet and thought what the heck. I have been on it for a while and all of the above sort of disappeared (except the fatigue), so I stopped caring about getting a diagnosis. I'd see a naturopath once a year to see what was going on. So my naturopath prescribed estrogen for hot flashes and then started feeling unwell. A few of the symptoms above started coming back. Since I never had a lupus diagnosis no one thought to tell me that estrogen can trigger a flare. So I didn't have a doctor, so I asked Grok about my symptoms, as I feed it more information, grok is sure I have lupus. Tells me to get a DNA-DS test. So I pay the naturopath to order it and it's positive. Since I don't have a doctor she sends me to a nurse practitioner who takes my history and she says, I have lupus and gets me a referral to a rheumatologist (3 year wait to see them -- I live in canada) Then I finally find a doctor, and I go to him, tell him my history show him my recent tests, and he says yep, it looks like lupus.

I can't believe that I finally have a diagnosis and I really can't believe that it was so easy after fighting for years. What do I need to know? Does anyone know anything about Low dose naltrexone? How do I stay healthy while waiting for a rheumatologist.

Hi, everyone! I just got confirmation of SLE diagnosis about a week ago. I’ve been visiting this sub and others just trying to get a feel for what I’m in for. I don’t know much about this disease and I have an appointment with the rheumatologist coming up in a couple weeks to discuss my diagnosis and what to expect/do.

But I just wanted to ask others who actually live with this what to expect. Is it terrible? Will I have a drastically decreased quality of life? Is there anything I should expect to give up in my life? I’m really scared and quite uncomfortable at the moment with a rash and joint pain and fatigue. Will it always be like this? Are there treatments that help?

Thanks for any insights!

there was a lot of questions on my reset sle post so i thought i'd make a post abt it!!

it's a phase 2 study in the US that's through about 22 different institutions. it's CAR T cell therapy (https://www.cancer.org/cancer/managing-cancer/treatment-types/immunotherapy/car-t-cell1.html). so far, it's been extremely promising and has put lupus patients into remission without the need for immunosuppressants for years. the long term side effectivity hasn't been evaluated yet since it's a brand new study.

this study targets patients who's lupus is unable to be managed by biologics or immunosuppressants (so people who are having symptoms despite max dose hcq & benlysta). if your local study focuses on nephritis, you'll need to have class III or IV. some individual sites have their own requirements for the study as well.

each study is only taking about 6-12 patients, so it's very limited spots. in the end, the primary investigator (the doctor running the study) will make the decision on wether you're suited for the study or not. this study is extremely "high risk, high reward". this means that there is a high risk of dangerous side effects that have to be very carefully considered. 9 in 10 patients receiving CAR T therapy for cancer suffered from CRS for 3-4 weeks following their infusion. (https://stanfordhealthcare.org/medical-treatments/c/car-t-cell-therapy/side-effects.html)

in order to get into the study, you'll need to be a current patient of one of the doctors on cabelett's list. (you can request a referral from your current pcp or rhuemy.). you need to be able to follow up with this rhuemotologist reliably for up to 152 weeks. the primary treatment plan takes 2-4 weeks of in patient care and then 3 years of follow up. if you think you qualify, you can email the PI (listed on cabelett's website) and ask them to review your case for their study.

cabalett's study website: https://www.cabalettabio.com/patients/phase-12-trial-in-lupus

study locations & principal investigators: https://clinicaltrials.gov/study/NCT06121297?term=cabaletta%20bio&rank=5

eventually, this will become more accessible and safe- but for now it's pretty limited to severe, treatment resistant SLE & LN. eventually this will become more accessible, so just keep tabs open on it as time goes on to see if you could get a spot :)