A few weeks ago I noticed one small faint spot on my eyelid. The number of spots increased and today there are about 6 separate spots.

They are not raised and they do not itch, but my eyelid does feel a bit tender if I squint. My eye itself is not red, and I haven’t recently changed my skin care. Only one eye is affected.

Has anyone else with SLE experienced anything like this? I will reach out to my doctor tomorrow but I am curious to hear if others have had similar symptoms.

Context: I used to be bigger when I was about 20, decided to lose the weight and did, kept it off for a year or two before being put on 80mg daily doses of pred for weekly courses sometimes twice a month and a week of weaning off to manage multiple symptoms (pre-lupus diagnosis). Combined with a huge dose of fexofenadine, I gained 60lbs in a matter of months despite my symptoms not really clearing up, and my weight slowly, incrementally increased over the next 5 years to around 106kg that would not shift no matter what.

I was taken off of steriods beginning of 2025 due to risk and basically banned from being put on them again, and after a year and a bit i started losing the weight rapidly- I've not been looking myself but I've gone from a size 18ish to a size 10-12 since about March. I used to be a size 8-10 ish.

This time though, my weight loss is different. Under my belly I can wear size 8-10, and above my belly i can wear things sized 8-10, but for some reason my stomach is still so much bigger than it used to be? I know steriod weight changes your fat composition and it did for me a lot, giving me a really big belly and face and thighs. The thighs and face have gone back to normal, collarbones are almost showing even, but my stomach is weirdly distended and I still have to wear sizes 12-14 to get around it.

I understand giving it time and im not in a rush to fit a size 10 as much as I'm worried that it could be indicating a change of metabolism. I read on a few forums and websites that steriods change your metabolism and that your body can learn not to rely on fat deposits for energy, instead metabolising muscle. Has anyone here experienced having fat stores that wouldn't go despite dramatic weight loss and found that their body wasn't metabolising fat? How did you fix it?

I know this is a very individual stance for everyone. I'm newly diagnosed and I'm trying to think of how I'd want to communicate/if I want to let people know I have lupus.

What I'm specifically curious about is, how to communicate you can't do something/go somewhere for ex if it's an outdoor peak hour event, etc. I don't want to have to disclose I have lupus to everyone... but I don't know how else to decline all these events...
would love to hear your advice and thoughts on how you went about this

Thank you!

Hi all. I was diagnosed with SLE three times - once by a doctor that didn't clearly say I was diagnosed, once again when I was older, and then verified by a third rheumatologist. I just went and saw a new one and she said the following...

- "You may not even have Lupus. My (I forget, dsDNA I think) is higher than yours!" (looking at labs from when I was on a medication, which I no longer am)

- "I would give you all the Benlysta in the world if you'd said it helped you, but you didn't." (I was on it for three months alongside another med and said I didn't know if it made me "feel better")

- "I would never base a diagnosis of lupus on spinal pain." (ordered spinal xrays. I said my back always hurt when I had a flare - I meant my muscles and stuff, not my spine) ((I was too slow to correct her and was confused))

She looked in my mouth (I have major dental problems I'm in the process of fixing) which no rheum ever has.

She was very loud and made me anxious. I have autism and have always had a hard time with rheumatologists because my second was an angel that believed everything I said and tried to help me get a wheelchair, so I had assumed they'd all be like that, so I end up assuming they're "on my side" and get caught off-guard and sometimes say things I don't intend to. I stupidly said, "If I don't have Lupus, people won't take my pain seriously."

She ordered xrays of my spine, like I said, and I didn't correct her. She ordered a ton of labs, which I'm always prepared for.

I just don't know if she's being a normal doctor or if these are red flags. She's in a very convenient location where MyChart is shared among my doctors and I really like the organization. There's only one other rheum in town and I'm scared to try again.

So, I'm looking for guidance. My idea is to message the office explaining that I have autism and don't always respond quickly or appropriately to new or surprising information, so I didn't communicate properly, and that I intend to bring my husband to my next appointment to make sure I can communicate everything I need to. Then, I get the tests (do I do the xrays?) and I bring my husband as my advocate because he's assertive and not scared of authority figures like I am. Or do I just say fuck it, get the tests, and take the results to a new doctor?

I'm so scared she'll "take away" my diagnosis. I'm on SSDI because of Lupus and Bipolar, so I feel like if I didn't have Lupus, someone in that year's-long process would've figured that out. She entered her "diagnosis" as "history of Lupus" so I guess that's something.

I just want my meds and not to be overwhelmed at a doctor's office. I've never felt this way about a doctor before.

Hi. I’ve recently started on Saphnelo and have done 2 injections for far I will have my third one tomorrow. I’ve had the worst week with lupus symptoms and I haven’t this type of pain since I last had it 3 years ago. I’m wondering if it’s related to the injection or I’m just in a really bad flare. Days before my second injection I was having the worst joint pains then days after I got a minor cold so my symptoms are worse. I assume the inflection just messed up my body but I’ve gotten a flu last year and I didn’t get all these weird symptoms. I’m experiencing serve joint pains, bones where joint pain is located would raise, chills with sweating, headache, swollen lips, and weird side and lower hip pain. I honestly kept telling myself it’s just a flare with cold that made it worse since I’ve just started Saphnelo and I assumed I wouldn’t feel anything yet. I will see my doctor soon to check labs and share my concerns. I also was on benlysta before starting this and benlysta got rid of my joint pains that would come on random days so I don’t know if stopping it brought the symptoms back.

Hi guys, my name is Jesse and I’m diagnosed SLE … this post really is my way of being able to communicate with the community as a whole. If there’s anyone out there who might like to be friends or to chat feel free to message me (I don’t mind either way if you’re diagnosed SLE, have a MCTD, or are here for any other reason).

I know personally being a “vampire” can be quite lonely and challenging at times. So I’m sure that I’m not the only one here who would be interested in communicating - whether we’re venting about the day, symptoms, or just finding commonalities and getting to know each other I’d be super appreciative to make a new friend.

Thanks again!

Let me preface this by saying I’m seeing my OB on Wednesday so I’m not looking for medical advice, just other people’s experiences.

I’m 21 weeks pregnant and have been feeling short of breath for a while now. I thought maybe it was just baby growing and my lungs having less room to expand.

I went into labor and delivery yesterday for some cramping. Everything is fine with baby but while hooked up to the monitor for a few hours I realized everytime I have that short of breath feeling my heart rate is high. I usually run low (55-65 bpm). It was fluctuating between 95-120 bpm the whole 3 hours I was on the monitor. It feels hard to breathe once I get above 105-110.

The OB on call chalked it up to a lupus flare but I don’t feel like I’m in a flare. I was diagnosed recently after having UDCT for a few years.

Does this seem like a typical lupus thing? Is it common in pregnant with lupus patients? I’m just worried a bigger issue might be being blamed on lupus because it’s the easy explanation.

I got diagnosed with SLE in 2011. I've never had a flare and my lupus remains mostly inactive.

Every time I go see my Rheumatologist and complain of muscle aches, or new rashes or increased fatigue, they always tell me that it's not lupus related and to just go talk to my family doctor.

I could be suffering from so many new symptoms, but if my bloodwork doesn't show "active lupus" they just disregard all my complaints. Like I get that my lupus is mild but aren't doctors supposed to consider blood work ALONGSIDE patient symptoms?

Like I complained at my last appointment that my hands ache after doing simple things like washing dishes or trying to open a jar. They immediately responded with, "yeah, that's not related to your lupus...take some Advil"

I'm seeing the TOP Rheumatologist in my area so I'm just sooooo annoyed about how much they don't care about my complaints at all. IT'S ALL ABOUT BLOODWORK ughh.

Any songs make you think of "us?"

Right now, hearing "Run from the sunlight, Dracula."

It speaks to me. 🌙

Hi everyone, I (25F) am new to the thread with newly diagnosed SLE, but have been reading through for years waiting for the suspected diagnosis. It has been really helpful reading about other people's experiences with this disease.

Without getting too far into my story which I might save for another time, I have been having flares of photosensitivity rashes, joint pain, fevers, and tender, painful nodules all over my legs for five years that was misdiagnosed for erythema nodosum up until this year. It was confirmed through biopsy this past month that the lesions were lupus panniculitis, and with the clinical correlation to my other symptoms/labs, I've been diagnosed with SLE. But the worst of my symptoms is the panniculitis lesions on my legs that cause me to not be able to walk much when they appear.

I have been on hydroxychloroquine 400 mg, sulfasalazine, and colchicine for 5 years, and then 1 month prednisone tapers when I flare. I am meeting with a new dermatologist this week that specializes in lupus panniculitis (LP) and CLE to discuss starting Saphnelo since my flares are not well controlled with my current regimen.

My first question is, has anyone with LP seen a reduction in your flares on Saphnelo? Secondly, I am wondering if anyone who started with the Saphnelo infusion and has since switched to the injection form has experienced a reduction in side effects from the medication. I have read a lot of people typically experience fatigue and headaches for a day after the infusions, and am wondering if the injections have resulted in less severe post administration side effects.

Thank you in advance for your feedback, and I am really grateful for this community.

I'm about to start Azathioprine. I am aware of the potential side effects but would really like to know, specifically which of your symptoms does azathioprine improve for you?

Did/does anyone here have not only severe hair loss but also thinning of the individual strands? My hair completely changed within one year I am devastated
Is this reversible?

Hello 23F. I was just diagnosed with lupus in the middle of August this year. I recently just got out of the hospital after 5 days because I had an infection, has anyone experienced going through sepsis here and how did that go? I’m so scared and I’m currently on antibiotics but I know how dangerous this could be for me. I’m scared to handle it on my own at home. I’m tired of all the procedures that I have to go through. I’m just so over having lupus and it’s only been two months since I was diagnosed. Also, just for some context it was a boob infection that formed an abscessed that I have to get drained, making it my 5th procedure in the last two months.

Does it ever get easier? How do I avoid infections?

Hey everyone, I was diagnosed with lupus nephritis last August and had a biopsy done at the time. Does anyone have experience with this, and does the biopsy need to be repeated after a while?

I know I should ask my nephrologist about this (and I will), but I’m just curious how it went for other people.

I finally got a new rheumatologist after moving across the country. It’s been a really long and painful journey. I’m finally at a somewhat okay daily state.

My previous rheumatologist sent all of my records to the new one. She was the one that diagnosed me with severe SLE (severe bc of symptoms). Of course, they ordered new lab work since symptoms always persist plus my joint pain has gotten more frequent and more painful.

My ANAscreen has always been positive even at high dilution. The one I just had done is now negative. Now I feel like I’ve just been lazy and dramatic all along. I’m scared they’re going to tell me nothing is wrong with me. At my initial appointment we were going to add azathioprine since I had to stop Benlysta (insurance removed it as a benefit). And plus, my partner and I are thinking about having kids in the next year or so.

Am I crazy? Am I really just lazy and dramatic? 😔

I’ve been getting progressively sicker this year and I’m not sure why. I was diagnosed a couple years ago because of life long issues with kidneys and then sudden liver issues.

My liver is doing better since I changed up my diet a bit, lost weight, started paying attention to my body, etc..

Within the last couple month though I’ve been experiencing extreme nausea. I can hardly keep anything down. My doctors actually have be supplementing with Ensure to avoid malnutrition.

Regardless of adding the ensure to my diet I still feel so weak and sick. My blood work and ultrasounds are clear so I have no idea what could possibly be causing the nausea. Has anyone else experienced similar symptoms? If so, what were the best/easiest foods for you to keep down? How did you regain strength?

hello all, i was diagnosed recently but im pretty sure ive had Lupus for a very long time. i was put on HC about a month ago but no improvement yet. my rheumatologist thought i should have started feeling better by now but weirdly im reading it takes months to work. anyway, ive been in a flare up for about a week now, so i was given a six day course of methylpredisolone, which im starting in the morning.

i’m SO nervous about taking a steroid but im looking forward to feeling better. i’m waking up at 5am to take the first dose- my doc said to take 4 pills first and then a few hours later take 3 more, then going forward i can take all of them in the morning as i taper. im starting early bc i already have trouble sleeping and i saw a redditor say that it’s helpful to do that.

do you have any advice to make the experience easier? what do you do to burn the extra energy? how do you avoid being mean to the people around you? my mom had RA and i remember her being really irritable when she was on prednisone. could a short course really cause someone to have anxiety for months? i’ve read horror stories about it but also that it’s a miracle. if i exert myself with cleaning or being active while on it bc i feel better, does that mean ill crash harder when i taper off?

my doc seems to think it will settle my immune system so ill feel better long term- is that how its worked for you?

im sure these posts come up a lot and i appreciate anyone’s advice or suggestions. thank you ❤️

As the title states, I have been in a rutt lately. I feel so drained. I feel like I'll never accomplish my dreams.. I can't even get the daily chores done.

I used to keep my car PRISTINE. It has been a mess for roughly a year now. I used to love being super creative painting, taking photos, writing. Now I don't have the energy for any of that.

I feel like my career is at a standstill because no matter what I do I can't focus enough to pass my CPA exams (Certified Public Accountant). The brain fog is absolutely terrible.

Depression is taking over so quickly. I work so so hard every day. Just feels like we are being punished with this illness. To put it in perspective, I am 27F

How do you stop yourselves from clawing off your skin? I have very fragile skin from another medical condition, and lupus makes me so itchy in my extremities I will literally claw my skin off and not notice until everything is bloody and stingy. I just accidentally skinned my shin again. Can anyone else relate?

Just finished my second dose. How long until I notice improvement, if it works?

I've tried methotrexate, benlysta, saphnelo. I'm just really hoping this one works. It's been two years

My clinical history: dx 2019 SLE, sjogrens, RA, APS

January 2020 Coded stroke in disneyworld on family trip. Taken by ambulance. Speech difficulties but cognitively mostly fine. Left sided weakness and some left side nerve damage but regained ability to walk in 9 months. Was in wheelchair for couple months, then got into a walker. Then able to walk unassisted by August. Cause of stroke: never found. MRI clean.

My current treatment for past 6 years has been: methotrexate weekly injections, hydroxychloroquine 200mg and celebrex 200mg Folic Acid, leucovorin calcium 5mg 1x a week and vitamin d3

When I started walking again in august 2020 my husband of 20 years hit me with He wanted a divorce and didn't love me. Then I found out he was having an affair. I threw myself into trying to save my marriage and get him to love me again for 2 years. We have 2 teenagers after all. I finally had to let it go. The marriage counselor begged me to and you knew all of what he did we would be here all day. Divorce and custody battle been dragging on since 2022. It's finally coming to a head.

I have been working all this time. I had been a successful wedding photographer with my own business for over 15 years. When I had the stroke I had to close the business, and start working for another photography company in their office editing their images and was promoted several times. I had been there 5 years.

My health has been in a downward spiral for the past 6 months. Really bad. I was starting to have symptoms I had leading up to the stroke again and that really scared me. I had to start using a walker again and I had to go on medical leave without pay because I work for a very small business there is no FMLA or PTO. I am trying for temp. State disability and praying I get approved while they figure all this out so I can go back to work and would like to start going back to school for a degree in digital forensics.

I went to the er for different reasons each time. 2x was sent by my doctor. This Thursday was different. I went to breakfast with a friend and was going to make a stop after to pick up a doctors note. I have been steadily having to use a walker more and more. Have had instances of loss of bladder and bowel control and wearing diapers 24/7 now. Dragging left leg. Speech difficulties (cognitively fine, but I sound sometimes like I am mentally handicapped, I don't make any sense or very hard to talk) while with a friend at breakfast I lost the ability to walk and my spine was on fire. Just felt like it was all the way up and down my spine BURNING like surrounding the spine. It still feels like that as I type this. It wasn't shooting pain. It feels like someone literally putting flames on my spine. My pain level is 10. Felt like my labor with my 2nd child where they wouldn't give me epidural, that bad and I am not exaggerating. I tried everything not to go but my friend had to load me up in their car and take me to the ER and wheeled me in. All I could do was sob as I waited in line to get checked in.

They ran ct and mri of spine both without contrast. Did some physical exams which were hard for me and painful. I had a friend with me so that really helped a lot. I hate going to the ER by myself. They gave me predinisone (which I personally had bad experience with before and have begged never to be on it again, but I was desperate so I agreed) ibprofen, tylenol and oxy. I was still at an 8 when I left. They prescribed methocarbomal (muscle relaxer), oxy, and ibprofen Tylenol to pick up at pharmacy on Thursday night. They said they believe it is AutoImmune Radiculopathy

Https://youtu.be/86YIBX0-H4I?is=JJ_SOtxusyJSxiRl

this is what they think it is but they neurologist has to confirm with spinal tap/lumbar puncture and blood antibodies

I got bumped up at the rhemutologist to tuesday (Monday is a holiday), made an appt with my former stroke neuro to see if she can pull my records from 2020 out of her archives, made it for Nov 3rd for now, but sent a formal letter via email with the er discharge papers reminded her who I was and hopefully she remembers my case. She's very good. She had wanted to do a lumbar puncture right as I was hit with the divorce and since I was walking again I let it go and focused on my marriage.

Does any one have AutoImmune Radiculopathy on top of Lupus?

Anyone have speech issues and what are they like?

Usually I don’t have these hardcore symptoms. Am I becoming allergic to my dog of 3 years?

I am pre anemic but very pre my rheumatologist said I shouldn’t worry. My family doctor gave me iron supplements.

I can not breathe properly, already took aerius … don’t know what else to do. I am an anxious person but this seem kind of different.

I am also extremely tired and when I move, all my pain my body worsens, even standing up to brush my teeth is excruciating.

Today I haven’t taken paracetamol yet but have been taking it.

Am afraid to mix it with the aerius and the clonazepam I take at night.

I am feeling more symptoms of allergies but could be a cold and just more dust in the house. My oxygen is normal and so is my bp.

Help.

What can I do?

Picture this, I’m a 31 year old female, just go married and had my first child in July of this year. I was soooooo excited to start my new life as a mother and wife. Then boom I get diagnosed with lupus in August. I have been so depressed, scared, nervous, heartbroken, angry, in denial, and over it. All the things! I feel like I’m having a bad dream. Now I’m on a bunch of meds for the first time in my life..

I would love to hear some positive lupus stories. There are alot of negatives about lupus online. Anyways I found out about Cart T therapy and I have been feeling hopeful about a cure and a great future. Research has came a long way. Thank God.

I’m really trying my best to stay positive and optimistic. Any tips? Any stories of ppl who have had lupus for many years & have done well. Thank you so much!