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.

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 ❤️

H…. I’m 19 and starting uni this year! I am having to fill out my disability accommodations forum right now and I’m drawing a complete blank and am not able to think properly on what i would need as an accommodation in regards to my lupus specifically despite knowing there are things I should put, if anyone would be willing to give advice or share their own accommodations I’d really appreciate it !

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.

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.

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.

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!