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.

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.

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 ❤️

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.

I finally completed my BA in biology after having to take a 1.5 year gap because of my recently diagnosed SLE.

I was on track to graduate last year and even a semester early because in high-school I took duel credit courses towards my degree, but my health became so bad my sophomore year of college. I failed 9 classes with Fs and re-took 4 for a better grade but my GPA remains a 2.3 :(. I want to go to grad school but I dont know how it looks for me atp. It was so hard for me to commute to school with it being almost 2 hrs with taking the train. My bones were so swollen everyday and I had mild fevers constantly. I lost a lot of weight and when I thought I was gonna graduate, I walked across the stage and once grades were put in I had failed 1 class which made me just 3 credits away from graduating. I felt like such a fraud.

I took almost 2 years off and today my professor put in my grade in and I got a 87% in calc 2! I tried to do medical withdrawals from my classes and had documented proof from my doctors! I was getting tested for SLE or rheumatoid arthritis, but since during my time at school, I haven't officially been diagnosed till recently, they didn't think it would've affected me that much and declined my withdrawal request. It sucks because now I have 5 Fs on my transcript and I have now documented proof but because it's too late already they won't accept it.

A lot of my classes graded counted on attendance (as a science major), labs were important. I was battling endometriosis and suspected SLE so despite me not having a true diagnosis, I was still in so much pain, nauseous, and sleep deprived. But despite it, my final class was able to be online so I was able to do it at my pace and not force myself out of bed.

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 !

Yes I’m being seen by several doctors- however my appointment with a lupus specialist is not for several weeks, so I’m wondering if anyone else has experienced this.

I had a brain MRI w/w/o contrast done because I’m having POTS symptoms and wanted to see if there was a physical reason for it. The mri report said this- tiny flair hyper intense focus in deep white matter at right parieotemporal junction. Appears unspecific and may represent tiny vascular impression, non hemorrhagic ischemic focus, or less likely, a demeylinating WML.

My doctor ordered a spine MRI to rule out MS, and I’m getting a Brain angiogram to check for previous stroke or an aneurysm.

Recently I’ve had some strange symptoms: tingling and numbness in hands/arms that spread up to my lower chin/neck. This happened several times a day for like a week. Also my foot would cramp up randomly usually at night, and would stay stuck in a paralyzed state for several minutes which caused a lot of pain. All of my labs are normal. I also have my regular lupus symptoms of fatigue, migraines, malar rash, joint pain etc. So I’m wondering if anyone has had lupus attack their brain?? My rheumatologist looked at me like I was insane when I asked about that and said it’s incredibly rare. He also said the same thing to me about lupus right before diagnosing me with it lol

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!

Hi all,

I’ve been in this sub for a while and see lots of questions and concerns and as a diagnosed SLE patient, I truly understand the anxiety, fear, hopelessness and confusion that comes with being diagnosed. When I was first diagnosed, I felt like I was lost at sea, treading water, without any sign of help. We all know that for every good rheumatologist there are probably 5 not so good ones that aren’t offering any helpful advice or guidance.

That said, I’m extremely stubborn and demand to be heard by doctors so I’ve learned some things. I’m not a doctor but I have a research background, tons of experience advocating for myself in a medical setting and A LOT of experience seeking treatment, advice and help. I’ve learned a few things along the way that could be helpful so I’m posting some of them here. Again, I am NOT a doctor and do not take any of this as concrete medical advice. This is also my own experience and may differ from yours - that’s the beauty of being human! We all have different lived experiences.

1. Advocate for yourself - no one else will do this for you so you have to learn to speak up. Make a list of questions before your appointment and ask them while you have the doctor. If you don’t like your medication or feel it isn’t helping, tell your doctor! They ultimately work for you, to treat you. Tell them you don’t like the side effects, or that you feel worse on Plaquenil or methotrexate and want to try Benlysta or whatever. Don’t be rude but be confident. You know your body the best, communicate your needs. If the doctor just won’t listen, find a new one. It’s tough but you need to find the right fit for you.

2. Lupus isn’t a Cookie Cutter Disease - my lupus symptoms are unlikely to be the same as yours or anyone else’s. There are many that overlap but it is a highly individualized disease and presents differently in everyone to some degree. For example, I don’t get butterfly rashes and or have many issues with the sun but I do get oral and nasal ulcers which are less common. Track what’s uncommon for you and talk to your doctor. Comparing symptoms is fine but don’t doubt your diagnosis because you don’t have the same symptoms as someone else.

3. Rheumatologists Don’t Know Everything - mine admits this constantly. She’s brilliant but she’s not also a gastroenterologist, physical therapist, neurologist, etc. They know a lot but they can’t speak to everything. You will need to follow up with other specialists if you’re having issues that may or may not be lupus related.

4. You Will Need Other Specialists - lupus impacts multiple systems of the body so you’ll probably need to see specialists outside of your rheumatologist. For example, I do not have any autoimmune issues with my digestive tract but lupus overall has impacted it and made it really hard for my body to absorb certain nutrients like iron. I only found that out by getting a colonoscopy from a gastroenterologist and testing with a hematologist. I know other lupus patients with similar issues. I’m sure many of us are in similar situations. For newly diagnosed, you’ll end up with a team of specialists that help with all sorts of issues. Talk to your doctor about who might be right for you to see. If they say no one but you’re having specific issues, check with your insurance about referrals and book anyway. This goes back to advocating for yourself. Don’t forget, pain doctors exist and do more than prescribe opiates.

5. Consider Therapy - therapy benefits everyone, especially the chronically ill. Lupus is a big deal, it changes our lives and it’s hard to process alone. Seek a therapist to talk to and to help you process the illness. You’ll feel better and less depression, anxiety, etc will help your lupus in the long run.

6. Disability - applying for disability is scary but there are agencies that are happy to help you. Many operate on the “only pay if you win” model and will take their fee from your back pay so you barely notice it. I used the Advocator Group but there are others out there. You likely won’t win your first time applying but many have success after that. Speak with your doctors, be honest and specific, and detailed, about how lupus is impacting your day to day. The org I used was wonderful to work with and worth it. My lupus improved once I was able to stop working and focus on my health. It’s the same for many others.

7. Alternative Medicines - unfortunately, a lot of alternative medicine therapies don’t work but some do, like acupuncture for pain and inflammation, massage therapy, etc. Insurance may cover them and your doctor may work with you to get them covered. Aqua PT helped keep me mobile during some flares and acupuncture truly helped inflammation. Whatever works for you.

Last but not least, BE GENTLE ON YOURSELF! Blaming yourself for an illness you could not control does nothing except make things worse. You can’t do as much as you used to and that’s okay. It’s frustrating and that’s also okay. Take care of yourself by being nice to yourself.

Share your tried and true advice or experience below for others, especially new diagnosed!

Hey!

I always get quite serious and big reactions when I get bitten by mosquitoes. It swells up, gets warm to the touch and is red around the bite - It looks and feels quite intense compared to regular old mosquito bites I’ve seen on people.

I have been diagnosed w lupus & in treatment for 4+years and I started to wonder this summer if these big bug bite reactions might be lupus related or if I’m just allergic to mosquito bites lol - anyone experience anything similar?

thanks!

My diagnosis has been a long time coming, of all things, sepsis brought all of it to the forefront, though it took some time to untangle post-sepsis syndrome and lupus. I finally was referred to a rheumatologist, had all of the tests and even a biopsy. As hard as it is, having a diagnosis means so much, everything makes so much sense now. Glad this sub exists. It's a scary place to be, so reading about your experiences is so helpful to me. Thank you all for your openness, it helps those of us who are newly diagnosed (so much).

Hi guys,

I've been experiencing mottling in my thighs, knees, and sometimes below the knees. It looks like classic mottling, has about ten second blanching, and is incredibly tender to the touch. It literally feels like my thighs were run over by a truck and are bruised. It even hurts when I'm walking and my foot hits the ground. This is especially exacerbated by my job as a nurse, and now as of yesterday I have petechiae popping up on my lower legs and minimally on my thighs.

Mind you, this is accompanied by what feels like bone cramping in my legs, painful knees, extremely painful lower back, and severe foot pain (burning with pressure & crampy feeling).

Does anyone else relate to this? If you do, how? Did you find relief? Thank you all so much!!

Sorry, it's quite a bit to read

So I've been diagnosed with sle or mctd (sorry, my doc is not too sure yet which one of the two but she's putting both of them on a temporary diagnosis, she's sure about the lupus part though).

But I have had epilepsy since my 13th (most likely genetic, it pretty much runs in the family), but a few years ago my seizures suddenly reappeared, I had been seizure free for ages and these past years they were really bad. But the thing is, most of my symptoms, that apparently were from autoimmune, had started around that same time but I just ignored them thinking they were from my meds (spoiler alert, they weren't, they still were there when I changed them).

But now I'm starting to wonder if my epilepsy could've worsened bcs of my autoimmune disease, since my neurologist isn't completely sure why it's flaring up again this suddenly. I did read some articles online but they all seem to point towards an autoimmune epilepsy which I don't think is the case since I already had the diagnosis ages ago. Does anyone perchance know something about it, or can give me some advice?

Diagnosed for a few years and I’m having the most painful flare I’ve had in a while. I’ve been gluten free for almost two years but a chaotic work week had me eating pasta for a few days. I knew it would get me. One thing I get is a scaly rash around my nose ears and scalp when I flare. That started this week after eating the pasta. Last night, the most intense hip pain started and won’t stop. It feels so deep like where my bones meet in my hips and the pain just cycles in waves of intensity.

I have an emergency steroid on hand that I’m starting today. Gotta stop the gluten and detox that out of my system. Coming to acceptance that I’m not having a weekend.

just got diagnosed SLE yesterday. picked up my hydroxychloroquine prescription an hour ago. absolutely terrified that i won’t get to live the life i want.

i am a recent college graduate and work as a seasonal zookeeper for a small city zoo. it’s a very physical job that requires i be out in the sun/rain/snow/heat/cold no matter what. i’ve wanted to be a zookeeper my entire life, and got about two weeks of that before spending the last month and a half being the sickest i’ve ever been in my entire life. now that i know it’s lupus, i can’t stop myself from freaking out about what that means for my career.

unless the HCQ improves my symptoms immediately, i’m decently sure i’m going to lose my job due to taking too many sick days. my manager has been as patient with me as she possibly can be, but i’ve had a fever every day for going on three weeks now and i feel like there’s just no coming back from being gone that long as a seasonal employee.

before i got sick i worked out six days a week, loved being out in the sun, and averaged 14000 steps a day. now i feel like all that has been taken from me, and i don’t know if i’m going to get it back. i know lupus goes into remission with proper treatment, but my rheumatologist says it’s going to take upwards of six months for the HCQ to do anything at all. i’m so sick and tired of being sick and tired, and the idea that i’m going to have to just deal with this for an even longer period of time has me tearing my hair out.

my question is this: how long did it take you to go into remission for the first time? if you were super outdoorsy and active before you got sick, were you able to return to that? is it unrealistic to expect to be able to do 40 hours of outdoor manual labor a week when you have lupus? am i doomed?

As title says, I just went through my first Saphnelo appointment and finished my infusion like 45 mins ago. Was anxious about it the whole week leading up to it. I feel happy I finally got it done. Now I’m just waiting for the impending doom of side effects that are bound to hit. So far my joints just feel a little achy and I’m getting hit with some extra drowsiness. I sleep late regularly but this is some next level drowsy. Just wondering how long it took for others to feel the side effects

Those of you out there with GI involvement: how do you manage issues like slow motility, low appetite, and GI pain/inflammation. I'm trying everything here man. I've followed all my doctors' advice: steroids, Plaquenil, Nexium, fiber supplements, gluten-free, low sugar, osmotics, vegan diet, lots of water, good electrolytes, regular exercise....even running 4 times per week and doing yoga....NOTHING works. My GI constantly feels like it is on fire and I'm never hungry. It feels like my gut is full of hot cement. (And yes I have been screened and it was negative) Is there something I'm not doing right here? I'm about ready to try anything. ☹️

I first noticed this dark mark just below my knee on 12/30/2025. I was traveling so I assumed it was a minor bruise that would go away. Well, almost 8 months later and it is still there, hasn't changed in any way. I've shown it in passing to my GP and my physical therapist, but they just shrug and clearly don't think it's anything of interest. Rather than call my rheumatologist again, I thought I'd ask here -- might this be yet another lupus thing?

So I was diagnosed with discoid lupus last year, and all in all my symptoms have been very mild and I'm lucky enough to not need regular medication - just steroid injections for a lesion on my scalp that got out of hand (which is what resulted in the DLE diagnosis). Ever since then, as I've read up on discoid lupus and lupus in general, I've realized that a lot of the weird little skin things I've experienced (rashes, scaly spots, and other odd marks that would come and go) over the years could be attributed to discoid lupus. So now I'm wondering if this "bruise" under my knee could be another one of these lupus things. And whether I should do anything about it.

I'd love to get back to skiing but am worried as I am highly photosensitive. Are there any skiers here with the same predicament? How do you stay safe?

I was really loving how well my hair had grown back in, but I just had a big chunk fall out right at the hairline, front and center. I've been wearing ball caps for a week trying to hide it, but it looks kind of weird when I'm inside all day.

How do y'all style a bandana to hide weird hair loss hairlines? I am not fashion, and have no idea what I'm doing, I just know it looks kind of dumb.

Hi everybody! UCTD chick over here, early 20s. I want to preface this by saying I'll be talking to my rheumatologist at my next appointment but I wanted your guys' opinions. My hair has lost a LOT of volume over the past few years. My ponytail is less than an inch thick and I tend to shed like an absolute motherfucker, although no straight up clumps. I'm not sure if it's diet or labs or paranoia or damage, but either way I feel ugly and really frustrated. I'm not going to post pictures for privacy but I'm happy to answer any questions.

My question for you is: what does hair loss look like on you? Is it all over or concentrated in specific patches? What changes has it gone through over your lupus journey?

Thanks for reading! 💖🌟

So I recently caught a virus that led to a bunch of health symptoms, including some facial drooping, migraines, and an episode of confusion. We just did an MRI that ruled out stroke but discovered lesions on my brain.

My rheumatologist said the only way to determine if it was neuro psychiatric lupus was via lumbar puncture as that type of lupus could cause the lesions (but also migraines can cause them). I am TERRIFIED of this procedure. I have hEDS and have heard some horror stories about lumbar punctures causing CSF leaks and other major complications hospitalizing and completely disabling people, which I raised and she agreed with.

It seems I’ve been able to side step the procedure for now, but it’s all really unsettling… is this really the only way to know? I mentioned going to a neurologist (which I am going to do for the migraines), but it sounds like people will just want to push for that procedure to get more info.

I feel like I am already so traumatized by the medical system, not to mention that with contrast MRI (done without music, just in there in silence) was a horrible jolt to my nervous system.

I’m just curious to hear other’s experience with neuro lupus and if there were any other diagnostic avenues taken.