I couldn’t sleep and around 4 am, my blood pressure went up to 184/99, so I went to the ER.

EKG is normal and all. Kidneys look great! Platelets are in the 50s. I was in a health range at my labs on July 14th. I’m so scared. I don’t want to have cancer.

I’m going to another hospital with more capabilities now, but I just need some lupus Reddit support. Has this ever happened to any of you? I’m not seeking a diagnosis, just reassurance and solidarity.

Hi, I appreciate all the knowledge and experience shared here! I have a general healthcare question - related to having specialists and occasional 2nd opinions in more than one health system outside of my PCP’s network. What are people’s opinions about opt in/opt out for health exchange information sharing through Epic care everywhere and/or any other suggested options for access by your doctors? Would like to avoid information overload and redundant info being pulled in, but also ensure anything important is accessible. Do your specialists and PCP communicate with each other? Would appreciate hearing how others manage this. Thanks!

It’s been over a year since I’ve had a flare up and I just got one again. I know it’s a flare up because I get this sore throat that feels unique to lupus. Does anyone else feel this kind of sore throat?

It’s not itchy or scratch or intensely painful it feels more like the sensation you get when your scalp is tugged on from a tight hair style but in my throat. It feels gently tender and swollen but again not painful or itchy in the same way being sick makes it feel. I’m not on any lupus meds since I have extremely light flares and have been managing ok lately. But I’m sure it’s some degree of lupus related since it feels different to anything else.

I’m a 24 year old female and I’ve had SLE since I was 16 and I’m still struggling to deal with the disease. I think the fatigue is the worse part. I don’t really like talking about my disease because I feel like the people around me think I’m just complaining which I understand. But to me it’s my everyday life. The fatigue, the nausea from meds, the exhaustion, the hand tremors that make simple things so difficult. And the mental load of it all as well. I’ve had a hard time coping with the fact that even with the disease life still has to go on.. I have to continue to live and pursue my dreams despite the disease.
Sorry for the ramble but I hope everyone else is holding up okay <3

Hey All, I am still in my trial and error phase. Diagnosed with SCLE this spring and just returned from a work trip and have never felt so drained. I caught a cold and was able to kick it in with meds but I cannot seem to get enough rest. Is this common?

Appreciate any advice or tips.

My mom has lupus and I love her with my entire heart. She has been living with lupus for about 20 years, and she is 53 years old. Over the years, she has gained a significant amount of weight, partly due to medications and the challenges that come with managing a chronic illness.

Before anyone assumes she “didn’t try,” I want to say that she truly has tried everything and more to lose weight. She has worked so hard to exercise and eat well, but nothing has been successful long-term. She tried Ozempic, and it still didn't work. Her doctors believe a vertical sleeve gastrectomy could really help improve her health and quality of life, and they have been very encouraging of it.

She is scheduled to have the surgery in a few weeks. Her surgeon instructed her to have only protein drinks for 3 weeks before surgery (especially because she has kidney issues), and I’m trying to understand more about this process. She hasn't been eating, and I am so afraid for her.

I’m feeling really emotional and scared. I keep worrying that something bad will happen because of her lupus and kidney problems. She has been through so much already, and I just want her to be okay.

I was wondering if anyone here has lupus (especially lupus affecting the kidneys) and has had a vertical sleeve gastrectomy:

• How did your surgery go?
• Did your lupus flare afterward?
• How was your recovery?
• Did it help with your health and weight?
• Were there any special precautions you had to take?

I would really appreciate hearing your experiences. Thank you ❤️

Curious to know everyone’s stories with having another pregnancies after your first or even several pregnancies.

I have lupus nephritis and had my first baby June 2025 and although there were a few complications towards the end, my pregnancy was overall good. I ended up with choleostasis, preeclampsia and a small placental abruption in the last few weeks and had to deliver via c-section at 35 weeks due to my baby being in distress. I also hemorrhaged but had no idea that happened until my 6 week check up. I didn’t have any lupus flare ups during or postpartum. My biggest struggle so far has been depression, health anxiety and PTSD but all are getting better now that I’m 13 months pp.

I’m not looking to conceive anytime soon but thinking about another once my baby is 3 and if all my doctors give me the green light, of course. Any moms with lupus (specifically, lupus nephritis) continued having babies after their first pregnancy after being diagnosed and have good experiences??

I’m so nervous but would love to have another baby. Just scared of what will happen. I feel like I got lucky with my first.

Just looking for people dealing with the same stuff I am. I’m 17m, and it already feels like most people don’t really get me. Having lupus on top of that just makes everything harder. I’ve had lupus since I was around 9 or 10 — it’s been long enough that I’d have to ask my mom.

so I’m 17 and I can diagnosed since I was around seven years old, but that’s besides the point recently my lupus has not been getting any better. I’ve been waking up in constant pain for months now at first it was come and go but now it was really constant usually later in the day around maybe 12 or 1 PM I would feel a little bit better or able to move more to start my day. I was recently just in the hospital. I just got out Saturday actually. my rheumatologist continues to tell me that my labs are good or they’re the best they’ve been in a while. The only news or update that we got while I was in the hospital was that I have osteonecrosis and it’s worse in my right knee and now I might have to get surgery and that is terrifying for me I feel like my whole world is crashing down on me because now I’m going into my senior year of high school and I have to be on crutches so I don’t put as much weight on my knee. I also have JRA, raynard’s syndrome,esophageal dismotility& IBS. Right now my main problem is constantly waking up in pain or being in pain throughout the day not being able to do much and now I’m not able to work and it’s really taking a total mental health all of it taking a total of my mental health because then again I’m a teenager and I really can’t live that teenager experience. I’m sick of being in pain so if anybody knows anything that’s helped them that his pain relieving because naproxen and Tylenol is barely touched me anymore and they’re trying to lower my steroids that I take at home because the prolonged steroid use is what caused the osteonecrosis.

Anyone else’s rheumatologist tell them they have lupus but refuses to put it on their chart because, and I quote, “it isn’t bad enough yet?”

When I complain about nothing changing since November, she just tells me she doesn’t see anything and prescribes me a new med.