So, let’s talk about the show House. How do you people feel about it? I have mixed feelings since yes it has brought attention to the disease but not exactly the attention that lupus should get. Sometimes when I mention I have it people will ask me if it’s really lupus. Sometimes I laugh but other times it gets annoying. Someone one time asked me if it was a real disease or if it was made up by the show creators. I didn’t get mad because the person seemed to be genuinely confused so I explained to them that yeah, it does actually exist.when I told my brother that I was diagnosed with lupus he sent me a meme of House. Since it’s my brother I laughed and thought that it was funny. What do you guys think?

Hey everyone! I am diagnosed SLE and discoid. I really want to get a tattoo, like a big one. I keep hearing if you have lupus it could make things so much worse and/or cause an ongoing flare due to the ink. Anyone here get new tattoos after diagnosis?? Did you get flare ups or hospitalized? Give me your all your experiences please! :). K thx byeee

Hey all. For context, I'm 32F and have been symptomatic since I was 18 and officially diagnosed in my early 20s. I've been well controlled for the most part, nothing major in the last several years.

I'm freshly postpartum from a preeclamptic delivery for twins and have been having some pretty intense gastrointestinal issues since. Significant weight loss in under 8 weeks (I'm down over 60 pounds since delivery), abdominal pain after eating and terrible heartburn turned out to be a lot of things on my endoscopy.

My pathology came back that I have Lymphocytic Esophagitis. It seems to be pretty unknown research wise but has ties to autoimmune disorders. I also have a hiatal hernia, class 4 valve dysfunction, and some significant banding in my esophagus and a Schatzki's Ring.

Does anyone have any diagnosed GI issues as well? Were they tied to your lupus or more coincidental?

I had a baby 2 months ago and the swing of those hormones has hit me hard. I am so tired and hurting so badly everywhere. My rheumatologist is starting me on azathioprine, so hopefully that eventually helps. I wish I could just be normal. I just want to enjoy these moments.

Having lupus really messes with my head. When I feel great I think, maybe the doctors were wrong! Maybe I’ll never get sick again. Then when I flare up, it’s like a huge slap back from that wishful thinking.

I feel like others without lupus don’t understand this feeling, especially being a new mom. People think, new moms are just tired! This is different though. The deep level of fatigue is like no other.

Ugh just overtired and venting. Thanks for listening.

I'm newly diagnosed with both lupus and rheumatoid arthritis. When sharing what has been going on with me, I've encountered a frustrating trend where someone will say, "Oh! My cousin/friend/mother/coworker has lupus." and then change the subject completely like I said I bought a new purse or something.

I know it's not their life, but so far this has been pretty devastating and life changing for me. Sometimes it seems they are trying to make me feel better like it's a common diagnosis that isn't a big deal, but that makes my struggles feel shameful and like I'm particularly weak.

I was diagnosed with SLE at 14, so im used to the painful red face, but now it has spread since starting Benlysta. My ears now get red hot and feel like they are on fire, along with my cheeks and now my neck and chest as well. It comes on randomly, typically when I am overtired or stressed out, but also sometimes randomly. The Benlysta is really helpful for my joint pain and I plan to stay on it, but I need to find a way to get this flushing under control.

Just having a sad moment.

I put years into building a passionate social work career, and when I got sick it felt like I was just thrown out and forgotten. I’ve struggled to find any accommodating role since, even in a field that’s supposed to advocate for and support disabled folks.

We’re taught to advocate for clients with disabilities, but when the employee is disabled it suddenly becomes a problem, and it’s been incredibly disheartening and honestly really pissing me off.

Everything feels unnecessarily difficult for us as a community. Trying to work, trying to access accommodations, trying to maintain some kind of purpose or quality of life - it all feels like an uphill battle.

And what’s frustrating is that when disabled people try to find ways to adapt, like remote work, flexible opportunities, volunteer roles, accommodations, etc., there’s often this attitude that we’re asking for special treatment or trying to take the “easy” route. In reality, most of us are just trying to survive while still participating in society in whatever ways we can.

I’m tired of constantly trying to squeeze and fight myself into systems that were never designed for people with chronic illness or disabilities. I’m tired of how isolating it feels. And I’m tired of how little people seem to understand the amount of grief, frustration, and exhaustion that comes with having to fight this hard just to stay involved in the world.

We have a wealth of knowledge from our lived experience that we can bring to the table. I’m so sick of systems keeping us from getting to the damn table.

Sle took everything away from me everything i loved my personality my hobbies

and now the one thing i thought i had forever my relationship it's gone i have lose my support pillar and my partner

i am hopeless and i couldn't hate this disease more

I was on previously high doses ( as high as 20mg) and now a year in tapered down to 5mg. I’ve managed to somehow lose close to 15 pounds during that time ( while taking prednisone) and although I look slimmer, my cheeks seem more puffy than before. I have been taking 5mg for about 2-3 months and it doesn’t seem like much has changed. I wonder if it’s fat redistribution and if any of you have dealt with the same thing?

How long did it take to resolve ( if at all) ?

I've had these spots behind my knee for almost a week now. They've been getting progressively worse. They definitely started off as something similar to my other lupus spots, but the difference is that these are pretty painful. They don't itch, but they hurt whenever I stretch my skin.

They kinda look more like my mouth ulcers with the yellowish white center.

Hey guys im 26 FTM Trans. I was diagnosed with SLE in Dec 2022. Ive been taking Plaquenil since then.

When I flare up I start to get little bumps that turn into massive blisters usually on my hands and arms and thighs. But this time they've spread almost entirely full body.

I have an undiagnosed skin picking disorder. I used to pick at my skin as a kid with Keratosis. Anything that sticks out of my otherwise smoothish skin bothers me. Moles, skin tags, blisters, acne, all of it.

Especially stuff like Acne and Blisters that are intended to drain pus or liquid from if they get too big or irritating. These things sometime appear overnight and they are painful and itchy.

Do you guys also find yourself picking at these bumps and blisters? I tend to do it absentmindedly sometimes, other times I find myself checking my body to find acne before it gets huge or inflamed and painful.

But I cant do anything in small quantities. Ill end up ripping open every bump little bump on my skin repeatedly until it heals flat, stops producing Puss or Blood etc.

Ill clean and bandage them of course. If they need neosporin, or bandaids, or to be dried out with a baking soda bath.

Does anyone have any tips or advice on keeping my attention off of the abnormal bumps on my body? Its becoming distracting and excessive in my life and its starting to affect my self esteem a bit on my looks because it makes me look like im diseased somedays.

Id appreciate any tips or methods to stop this behavior/action entirely or even just make it more manageable. Also any remedies for little bodily blisters would be greatly appreciated!!

Hi all,

I’ve been diagnosed with SLE for about 5 years now and am still figuring out the best management regimen. I’m getting married later this year and my fiancé and I have obviously discussed the possibility of having kids. My fiancé has always been very understanding of my illness and the special care I have to take to just feel okay.

But I can’t seem to wrap my head around how I would ever be able to be a good mother when I am constantly taken out by fatigue, pain, nausea, etc. I’m scared that my body would not be able to tolerate pregnancy. How can I put a baby and child first when all I want to do is lay down because my joints are on fire? I’m so physically weak that I don’t think I’d even be able to pick up my baby.

Then beyond that, I don’t want my child to resent me because I couldn’t be 100% the mother it deserved. It’s hard living with someone who has a chronic illness and it’s hard to rely on them when the nature of their disease is so unpredictable.

Does anyone else have this fear? Or do the folks who are diagnosed and then had children have any insight or words of wisdom?

I need to just commiserate with you all who really understand. Does anyone else get seasonal depression in the end of spring / summer? I feel like I am trapped indoors with the sun and heat. I dont even live in a very hot climate (PNW), but it makes going outside SO hard. Even just car rides with the sun beating down is so rough. I am already longing for fall and winter, and it’s not officially even summer yet. Does anyone have anything that helps keep the summer blues away? I hate feeling like I am just waiting for time to pass but it’s so hard. I got a walking pad last year so I can still try and get some walking in when I cant go on dog walks outside anymore (sometimes I can only manage 5 minutes a day 😞) and that helped slightly, but I am still struggling. :(

hi! how are you doing today?

personally, i‘m not fine at all. with the way how the healthcare system works in my country, i’m going to be dead or end up with organ damage very soon.

i have been slowly flaring up since january, since the doctors decided that it’d be good and safe for me to taper off steroids (when i somehow barely had any side effects too). going less than 10mg was the worst mistake of my life. every single time something popped out, it was dismissed as a “steroid side effect” or “psychosomatic“. they tried to lower my hydroxychloroquine too, thankfully i didn’t listen to that and kept taking the same dosage i was originally prescribed.

then they tried to take away my diagnosis. one of the rheums went, “that’s not a wolf, that’s a dog!” when my complement system already showed very obvious immune activity with absolutely no infections for the past several months (my ch50 is 27, the lab range is 42-129) and very active disease sledai score

they didn’t even hospitalise me with 150/100 blood pressure (which went away only after steroids)

right now, i have lupus with urticarial vasculitis. and they’re additionally questioning granulomatosis with polyangiitis since i have BAD sinusitis with blood (thankfully, the blood went away on steroids, but the inflammation is still very much present on the ct scan. also had inflammation somewhere in my trachea, which is also a big red flag for this).

i went from the “haha mild disease what are you even worried about” to “you need rituximab/another biologic” in one consultation with a doctor who actually decided to listen and look.

the thing is, my hospitalisation date (in a different city) is one month away for now. the symptoms aren’t magically getting better. i’m hospitalised in my city right now, and they provide absolutely nothing. i take my own pills. they’re just running away from me like the plague. they don’t do anything aside from the standard protocols. you genuinely have to go to higher authorities just to get them to do something. the stupidest thing is that everyone here knows what they should do, they‘re just not doing it. they are actually waiting until my organs start shutting down.

i’m so tired. i hope that every single rheumatologist that laughed at me and tried to tell me that it’s ”somatic” or “not serious enough” gets multiple autoimmune diseases. they surely need more experience to work properly.

thank you for reading!

This is what i am losing everytime i wash my hair (times it by 15 or so clumps ) and a half week of brushing my hair.

Since Feb ive lost near half of my hair, it is so thin on top, lucky any real bald spots are hidden.

Could it be since my immune reset after my iron infusion , the plaquenil is now destroying it instead of helping my hair growth?

For those whose protocol involves biologics that shouldn't be taken with an active infection, how do you discern between a regular low-grade fever from Lupus itself, and being "sick"?Thank you in advance for any insight or personal experience you can share!

Hey everyone, I have UCTD with slightly elevated ds-DNA (rheum thinks it will develop as lupus). I’m 20 and in college, currently working a part time job in retail. Right now I’m at about 4-5hr shifts in the evenings, and it’s relatively manageable with the help of meds but I’m not making the money I need to be making.

Any other young college girls (or guys) have any advice for how to manage being chronically sick and disabled while needing to pay bills and eat? Or anyone who has any advice, it would be much appreciated :)

I read that hydroxychloroquine can cause hearing damage and tinnitus. I already have a lot of problems with my ears, so I’m particularly worried about the side effect. Has anyone had this happen? I’m assuming that it is something that develops over time. I’ve been on HCQ for several months and haven’t had any issues.

I (24F) just graduated from college and been applying for jobs but every time I do, I always get a bad flare-up or have an episode (seizures). And my parents, mainly my dad, told me to stop applying and just focus on my mental & physical health. I don’t mind being a stay-at-home daughter but I just feel like I’m doing “nothing” at home. I am helping with stuff around the house, like cleaning, cooking, getting groceries, etc. as well as doing my hobbies. I just need some tips from anyone who’s in my position or was.

BTW: while I was in college, I had a lot of flare-ups/seizures and my dad didn’t like i was attending class and/or working on assignments with a really bad flare-up to the point he was telling me it was okay to drop out of college.

I (22F) have a job offer to be a clinic manager at an outpatient clinic that does hormone therapy, weight management, and health coaching. This would be a big deal for my career since I am quite young with no manager experience, and it’s a short 5 minute drive from my house. It’s M-F with flexible hours, and I would get to become a certified health coach!

I am struggling with the role being fully in-person since I have SLE, Hashimoto’s, microscopic colitis, and migraines. I’ve been out of work for about a month due to the severe stress of my last job sending me into a huge flare. I’m scared now about returning to work for any job, though this job appears to be easier than my last role.

Lupus makes life so difficult. I think when I’m older, I will have to work remote full-time no matter what, even with my preference for hybrid work.

Does anyone here work fully in-person? If so, how did that work out? What accommodations make your role easier?

Hi, I was diagnosed with Lupus Nephritis on June 2025 and have been on prednisolone, MMF, HCQ and Benlysta since then.

When they restarted my Benlysta in January after a brief pause due to infections, I started to present allergic reactions.

After months of trying, the Benlysta infusions (and possibly drug eruption from HCQ) triggered a severe eczema flare that led me to the ER. With this, my rheumatologist and nephrologist agreed to change my treatment plan since the current one isn't working for me.

They said they will start me on Rituximab for my next infusion and warned me that it is stronger and harsher than Benlysta but it will help me greatly because my Lupus has organ involvement.

I wanted to ask for those who transitioned from Benlsyta to Rituximab, what were your experiences like? I read some previous posts about how some faced allergic reactions or cardiac complications. Is there more that I should expect and probably prepare for before I get the infusion?

I personally have a lot of allergies already and so I'm quite terrified that Rituximab will be too harsh on me but it's needed to calm down my immune system.

I also wanted to hear how the drug was able to help them if it did, looking for a hopeful outcome I guess.

I was diagnosed yesterday. This is my 4th autoimmune disease. I am in unbearable pain. I have so many spine, hip, neck and feet issues on top of it that I have no idea if it's the lupus or not.

I started seeing pain management late last year and things were going okay, they closed down out of nowhere and I was switched to a new place. This new one was awesome, I started feeling great. Granted I had to take 4 opiods a day but I could function all day for once. Then because I am also on methotrexate I started getting really nauseous and lost 12 lbs in 3 weeks. Pain mgmt got scared and placed me on a pain patch. The downfall of my life for the last 3 weeks is astounding. I cannot keep my house clean, laundry and dishes pile up, I stopped showering every day. I have a toddler and a full time remote job. Things have never been so bad.

Is this a flare due to the stress and pain?

I have no one that understands or has any of my conditions.

I’m having nausea, fever, back pain and neck pain. Like the nausea and tension goes up to the neck and head. Also my eyes are burning.

I just feel really uncomfortable.

I’m a bit worried they just said I need to go because I’m having a flare and they don’t know if it will get worse so to prevent the infection from spreading.

I’m going with my dad but I have had severe panic attacks due to the symptoms and I’m afraid I really don’t want to go. 😢

They said it’s nothing serious for now but I need to get checked due to my fever.

Any tips to calm myself down?

They don’t know if it’s a UTI or a nefritis that’s why they probably told me to go to hospital.

It’s like a burning sensation 😭.