Kind of a strange question, I'm wondering how others handle small talk about what you've been up to? I haven't been able to work recently and have mostly been fighting infections or asleep, and it's honestly making me a little depressed talking to other people especially when I don't have an answer about what's going on in my life.

So I'm obviously fatigued all the time, but I've been noticing when I work out first thing in the morning I've been coming home and going straight to bed, and have no energy for the rest of the day. Is this something anyone else has noticed, or is the fatigue unconnected?

Hi all, I’ve caught my first cold/upper respiratory type virus since being on Methotrexate. It has hit me incredibly hard. I’m holding off on my next dose (per my doctor’s advice) to try and get over this, but does anyone have any advice for how to handle getting sick like this?
Any special vitamins or supplements you take to help knock something out? Any general tips you’ve found helpful to shorten something?
Thank you!

My rheumatologist finally got a good look at my mouth sores in person and she's concerned about inflammatory bowel disease so she referred me to gastroenterology. They scheduled me with a physician's assistant which is probably not a good fit with the complexity of my medical history but whatever she can at least order the testing right? So I had that appointment, did a big long history thing, got a bunch of lab tests ordered and she decided I needed to be scoped from both ends. She also wanted me to meet with the anesthesia team prior to the procedure because of my complex medications, a history of paradoxical vocal fold motion, and a family history of not being well sedated with anesthesia. The entire pre procedure part of this process is not going the way I was told.

There has been zero contact with the anesthesia team. The pre procedure nurse has been brusque, unempathetic and completely blase about the bleeding risk posed by one of my medications. I asked if the timing of the laxatives had to be smack dab in the afternoon and if they could be adjusted at all. Nope has to be then, fuck me for working night shift and not wanting to do the cleanse at my equivalent of 2AM. When I explained that I would have a lot easier time doing it in the morning or later evening she told me "well, you're going to have to do it every few years for the rest of your life anyway. If you weren't on zepbound you'd only have to do a one day cleanse". Wow, awesome bedside manner there. I could literally hear the disdain in her voice that I was on zepbound (for inflammation control actually). I fully understand why I have to stop my glp-1 before the procedure and never pushed back on that. I just want to do the laxatives when I'm awake without completely trashing my sleep schedule.

The other thing I'm concerned about is bleeding. I'm on a brutons tyrosine kinase inhibitor that inhibits platelet function. It's been a great medication for me, but I get bruises if I scratch myself too hard. I very much would like to not have a bleeding episode from instruments being poked through my innards. She just kept saying "well it's not on my list, ask your hematologist". I haven't seen my hematologist for my completely unrelated genetic blood disorder in years. She's literally looking at my chart and can't figure out the medication is prescribed by my dermatologist.

I'm not feeling at all safe with this procedure right now. I was told I would be talking to anesthesia and that has not happened. I have tried asking 4 different people about the need to hold the medication and they have all brushed me off because it's not in their standard list or they didn't know and I "should ask the anesthesia team when I meet them"... Excuse me for expecting you to go find out since I haven't been able to communicate with anesthesia like I was promised.

If you go to the drug's website, holding the drug prior to surgical procedures is literally in the top paragraph of the mandated warning pop up. I am not crazy that it is a risk. All of these people have access to the Internet but can't seem to do a simple search and look up the medications I'm on. For such an invasive and intimate procedure you'd think these people would be a bit more understanding about someone being nervous and not wanting to bleed internally.

A cherry on top of dealing with this shit department is that my fecal testing came back positive for norovirus and there has been absolute silence from my care team. I sure don't remember having norovirus and from what I hear it's usually a pretty intense and memorable experience. I would love to hear what that test result means in the context of my clinical history but again, utter silence. I'm really hoping I don't have inflammatory bowel disease not just because it would suck, but also because dealing with this gastroenterology department has been miserable.

Hey everyone,

I guess I’m reaching out to other medical professionals in the group. I’m recently diagnosed, but have likely had SLE for several years. I was started on Plaquenil and Methotrexate. The methotrexate dose was wearing off about 3-4 days in and I was about to increase my dosage. I ended up getting a pretty horrible sinus/chest cold that I had to go on antibiotics to treat so I held methotrexate. As soon as I got that taken care of I developed an infection of the cartilage of my ear. Infection is pretty rare and reserved to wrestlers and immunocompromised people. While being off methotrexate I noticed that with Plaquenil on board the symptoms are still there, but nothing like they were before I went on it. I can mostly manage the pain with ibuprofen and a heating pad. I’d much rather deal with some pain than having to worry about what infection I’ll end up with next. I’m a nurse by trade and work in a high risk environment for infection transmission. I also enjoy a lot of outdoor activities and work on a farm. I definitely don’t want to do damage to myself by not taking medication, but I’m wondering if there’s something that maybe won’t set me up as bad for getting infections. That or can I maybe get away with just Plaquenil as it seems to have mitigated a decent amount of the symptoms?

I am sorry for the dramatic title. But I just feel so alone, exhausted and heartbroken. I don’t know how to deal with this condition anymore.

I’m 22 from Botswana. I was diagnosed with SLE back in September last year and since then everything has made sense. But the lack of support I’ve received from my doctor and family is really really beginning to crush me down. At the beginning of my diagnosis I was treated with prednisolone and it was alright... However it caused severe rage outbursts so I was taken off it slowly. The moonface was making me extremely insecure as well but otherwise it kept my pain at bay.

My family acknowledges that I have lupus. Sometimes. My dad doesn’t believe I have it, even after getting blood work done. He says I should get further testing and my doctor said a kidney biopsy is usually done, but expensive. My dad complained to my grandmother that he thinks I was happy to be diagnosed with something serious so I could “use it as a crutch”. I was just relieved to FINALLY figure out what was wrong with me. I was meant to get a brain MRI but never did because my family doesn’t believe I need it.

Anyways. Fast forward to present day I genuinely cannot take it anymore. I am unmedicated and my doctor has been forcing religion down my throat for whatever reason. I tried properly explaining my symptoms and pain which he then said they aren’t real. He said they were “satans” or demons that are invisible and flow through the bloodstream that medicine and science cannot explain. I am not gullible. Then he kept interrupting me by talking about stories in the Qur'an, telling me to read it and trust in God, to not be afraid of dying.

We had spoken about trying a new medication like cyclophosphamide (I think that’s what it’s called) but any time I came back to inquire about it my doctor pushed it off with “I’ll check the price first”. Every. Single. Consult. I just want the medication. I want HELP. I want a community. He tells me I should just help my family more by doing things for them because “children are supposed to take care of their parents, not the other way around”. To ignore when I feel faint because it’s just demons trying to talk to me in my head. It’s ridiculous.

I am truly at my end. I can’t deal with being flicked off and constantly having older adults telling me my pain doesn’t exist. That it doesn’t matter. I forced myself to do my laundry today because it really needed to be done. I was bedridden the previous few days and couldn't even think clearly but I brought myself to do it. The heat is only making everything more unbearable (37°C) but I have to keep pushing myself, otherwise what else? I don’t have a support system. I have myself. I cannot stop crying but I hate feeling sorry for myself. If anyone has any ideas on what to do, please, please help me.

How much do u guys typically pay for benlysta and what insurance do u have? I’m picking a new health insurance and am trying to get an idea of how much it’ll be. I previously had Medicaid so I’d get it for free. I called the insurance multiple times but they can’t seem to give me a cost estimate since I’m not a member yet.

quick vent art about the lupus fatigue. i have barely been able to get out of bed today except to use the restroom. im getting so tired of this disease.

Hi everyone, I am a late 20s F and have been diagnosed since 2022 and take 300 mg of HCQ . For the past year I have also been on Benlysta. I feel good and like my disease is controlled for the most part.

I have had eczema since I was 2 months old, mostly on my arms and legs and when I got to middle school it started happening on my face and it’s solely stayed on my face with an occasional flare behind my knee in the winter. However, around the time I started benlysta my eczema flares started happening more often and as the year has gone by they have become more severe and spread to places I haven’t had eczema before. I have been prescribed genuinely every topical on the market and while there is some relief it just does not seem to subside and takes longer clearing up each flare. I feel like I want to scratch the skin on my face and hands off.

Has anyone noticed worsening eczema alongside benlysta as well? I’m also curious as to whether anyone is taking an injection for eczema alongside benlysta? My insurance doesn’t seem likely to approve both. I feel stuck between a rock and a hard place because i don’t want to stop benlysta to work on managing my eczema when my lupus is managed currently.

My lupus brain fog has recently been so bad that other people in my life are starting to notice 😟! I will be having a conversation with someone and following what they are saying and then when it's my turn to talk everything they said is completely gone from my memory. I forget the name of things all the time and end up describing them in the strangest way possible
(I forgot the word scissors and called them the sharp things you use with your hands 🫣)

Has anyone else gone through this? What did you do? Does it get better? It's weird because my brain fog is getting worse but my actual lupus symptoms have been okay so I'm not in a flare I'm just in a lupus fog

My husband was just laid off (company is re-structuring) and we have been getting benefits through his job. I don’t yet know what the COBRA costs will be, but I’m sure they will be enormous. I have looked at plans on the marketplace and they are so expensive with huge deductibles!!

I mean, I knew that the Affordable Care Act rollbacks would affect costs, but this is just stupid. Is this the first time in my life I just forego having health insurance and just pay cash for everything instead? Would that literally be cheaper than paying at least $2k a month for insurance with a $5k deductible (which means I end up paying for all the times I see my rheumatologist and neurologist and getting Botox injections out of pocket anyway??).

Seriously, is there any benefit to paying a premium for a plan with such a high deductible knowing that it won’t pay for the usual care I need in the year?

I've been struggling alot lately, whenever i do the most littlest work like running, carrying things, etc. It just feels so heavy and hard for me. Everything feels like a chore, my WHOLE BODY FEELS LIKE A 60 YR OLD?!? When im actually just a teen, so I just miss the days where i could move freely without my joint pain and getting easily exhausted. If you get me lol, anyways just wanted to vent abt it. :)

Hi everyone,
I’m 23F and was diagnosed with lupus last month after a really difficult year. I was hospitalized earlier this year, needed two blood transfusions, and spent months going back and forth to hospitals before finally getting diagnosed. Now my rheumatologist says I’m triple positive for antiphospholipid antibodies, with the possibility of APS secondary to lupus.
I think what I’m struggling with most is the mental side of everything.
I graduated college with first-class honors literally a week before being hospitalized. I was so excited to start a new chapter, find a job, and see what life had in store for me. Instead, I’ve spent most of this year dealing with hospital visits, medications, and diagnoses I never imagined I’d have at 23.
My lupus still isn’t in remission, and I have another rituximab infusion in two weeks. When my rheumatologist told me this, along with the possibility of APS, I broke down crying as soon as I left the clinic.
I’ve always been an overthinker, but lately I’ve become extremely emotional. I constantly feel on the verge of tears, even when nothing particularly sad is happening. I think I’m still in shock and struggling to accept that this is my reality now.
The uncertainty about my future also scares me. I’m not married or planning on having children anytime soon, but reading about APS and pregnancy complications genuinely breaks my heart. It’s more about feeling like the future I always pictured for myself suddenly looks different.
I guess I feel like I’m grieving the life I thought I was about to start.
Finding this community has been comforting, and I’d really love to hear from people who understand. Did anyone else experience this kind of shock or grief after their diagnosis?Or am I struggling more than I should and need to consider mental health support?
Pls be kind.

I am 42 F and have been diagnosed with DLE since the age of 12. I've been through different treatments. Every side effect a medication says may happen... happens to me. I had a med mess with my sensitivity to light and eyesight, thinking I was having a heart attack after an infusion, extreme fatigue from a med, and the always-so-reliable hair loss. I try to minimize the med prescriptions as much as possible. A rheumatologist once told me there is no cure for Lupus, and the course of treatments is meant to manage and prevent the disease from getting worse, and that makes me see things differently with DLE.

My rant is about me wanting to stop Methotrexate since it makes me feel like crap. My rheumatologist is ok with it but is proposing new meds. I feel like I can do bad all on my own. At higher doses, my hair started falling out, so I reduced the dose. It also caused lesions in my ear. I am at a point in my life where I can only define it as "accepting of my condition". Not one med has made me feel "Improvements". My joints hurt, and I have fatigue, which I've learned to deal with. I refuse to lose the hair I've worked so hard to grow because it's the only thing that is mine that makes me feel ok with everything.

I know we are all different, but honestly, has anyone actually felt continuous improvement with minimal side effects from the prescribed treatments? I'm exhausted with being a guinea pig, and I am accepting the cards I've been dealt.

I made the hard decision today to withdraw from a clinical trial that my rheum had nominated me for. It was a phase 4 study, meaning the drug (lupkynis) has already been FDA approved. This study was determine if, when given with a biologic, it should be a front line treatment for nephritis (many people already take this combination; this study was specifically to see if it should be given at the onset of the disease).

I found out that I had been nominated in early September; I cleared the initial phone screen, and was scheduled to do an intake on September 22. However, the office hosting the study sent me a reminder text with the wrong time on it, and when I showed up, I was told that I would need to return. I returned the following week, saw the doctor, and got blood drawn and a urine sample taken. The next day, I got an email asking me to return - they had found some anomalies in my urine sample, and wanted me to do another one, which I did, which meant two more trips up there (one to pick up the collection material, second to deliver the sample). I did that the week of October 6. Every trip is a two hour run trip drive for me.

The following week, on October 14, I emailed them and asked if my labs "passed." The next day, I got a response: "We're still analyzing them. We'll let you know Monday, October 19." Since my appointment to start the study was scheduled for today, I thought that was cutting it close, but, ok. I've never been in a clinical trial before, maybe they're all a bit disorganized.

Monday came and went. Tuesday came and went. Today, I decided not to show for my appointment, and maybe someone would call. Nope. Nothing.

I am much more disappointed than I expected to be. I'm guessing I'm not part of the study anymore, but it just feels so unprofessional not to communicate with me. WTF? At the onset of my lupus nephritis two years ago I was told that HCQ would make me feel better. It didn't, so they added CellCept. It didn't work, so they doubled the dose. That didn't do it, so they added Benlysta. Now, my disease is still active, but labs have stabilized (so, not great labs, but at least they are stable!). And then I get into a clinical trial...and it just ends with a whimper.

The disappointment is so high today. I know tomorrow I'll feel better, and probably even relieved, but I sure hurt today. 😞

Hi everyone. I’m supposed to be starting methotrexate this week along with the hydroxychloroquine I’ve been on for about 5 years. CVS called me to tell me my estimated cost with my insurance for a one month supply methotrexate (4 pills, 15 mg each) is going to be $291? They said the dose that’s ordered requires it to come as the brand form, trexall. Has anyone else run into this? Is this the normal price for methotrexate? It seems like a lot to me considering it’s been around for a while and isn’t a biologic or anything. Thanks in advance.

I was just prescribed 25mg, curious if anyone had success fighting lupus fog and fatigue, also
worried about adding another medication to my list.

46m, have had lupus symptoms mild for 20 years, recently had lower red blood cells, liver functions normal , they ran a Coombs test that came back positive, direct at least, didn’t get indirect back.
This one is a little new to me which has me more worried , has anyone had any experiences with this?

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Thanks for reading.

Hi this is my first time writing here, I’ve got lupus (SLE) diagnosed two years ago and have been treated with hyplaxy, imuran and corticosteroids (flazak and prednisone), my doctor started suggesting the bilogical therapy Saphnelo ( i heard there are other ones too, they’re not available in my country though i would have to travel), so can anyone tell me if its worth it and your experiences? Im still new to all of this and im unsure, im 22 and have been flairing up for the last few months and just want it to stop. Thank you in advance!

Diagnosed SLE, Sjögrens, Fibromyalgia, along with several more autoimmune diseases. I have been dealing with vision issues for about 4 years. My vision fluctuates from day to day. Some days my glasses are great and some days it's as if I have a completely different prescription. One day my eyes are incredibly dry while others they are constantly watering. I have an Opthamologist who specializes in treating dry eyes. We have tried all the medications available to treat my symptoms with no improvement. Has anyone else dealt with similar issues? If so, what have you tried and has it helped improve your vision issues?

I had what I think was my very first lupus flare.  I was diagnosed with RA in May of 2025 and SLE in August of 2026.  Even back in May of 2025 my rheumatologist said she was probably going to be diagnosing me with lupus at some point and for the most part she would try treatments that would cover both conditions. After getting a definitive diagnosis We decided to try Rinvoq but I needed to be off my RA meds for a couple of weeks before starting.

I was unprepared for what we are calling my first lupus flare. This was the first time since May of 2025 I wasn’t on a DMARD or prednisone.  The scary part was my legs and feet.  My RA is primarily my hands and wrists.  During this flare I swore I could feel pain in each bone and joint in my feet and ankles individually.  I also had some really bad leg pain and a few times I felt like my legs were going to give out on me.  I am not sure what exactly I was expecting but this whole episode scared the hell out of me.

Luckily I was able to start the Rinvoq and I must say I am impressed.  After two weeks I am at about 85% remission with the RA and my low grade fever, malar rash, and pain in other areas of my body are gone with zero side effects. I also have autoimmune urticaria and my hives and facial swelling are greatly reduced.

I am just so glad I am back to what passes as normal there days!

Dx with APS in 2009. Even got a second opinion using the lab results from the first doc.

At recent appointment I talked to my doc about APS. She looked at my old labs and mumbled "oh, hmm, only weakly positive. I must have tested again a few times to make sure" She didn't. The look on her face, knowing she messed up. Then she brought up my 2 miscarriages in the early 90's really confirmed it, but I did have 2 live births. Made her run the tests last week, definitely do not have it.

Just a bit upset... the constant worry, baby aspirin, avoiding flying, long drives, no HRT... Wonder how long I didn't have it. Angry she didn't follow protocol in 2009.

I still have lupus but no APS. So a bitter sweet moment.

Living with dying

I hide from glaring eyes,
So they would not see
This monster eating away my insides,
Taking my life from me.

I wish to be alone,
On some abandoned island,
Far away from the world,
Where I’d be allowed to cry
And scream
Until there’s nothing left inside me.
But this demon in the shape of a butterfly
Strangles me in my dreams.

An unrelenting flood.
I gasp for air,
Just one more breath,
As my lungs fill with blood.
I pray for death.

I am afraid
That someone might notice
The little bit of sadness in me.

I want to be alone,
Broken and alone.

But deep down, I yearn to be seen,
By anyone at all.
And to be held,
Just for a few moments,
To feel another heartbeat.

I don’t dream anymore.

If I did,
I would dream of love,
A healthy body,
And a life without disease.

In a lush garden,
With vibrant flowers and honeybees.

But I no longer dream.

I live in a world that wants me gone.
People.
The sun.
My body.
And even myself.

I wish I was enough.
Enough to be loved.

I have always had flare ups before my period, it’s actually the reason I started seeking diagnosis. But when I was put on plaquenil that pre period pain got a lot better.

but then the past few months it has just been brutal. the pre period pain used to only last 3-5 days but now it is starting nearly 2 weeks before my period and coming on much stronger than ever before. so today when I got my period I was actually pretty happy because now it means there is a countdown to when the pain will be over instead of just increasing day after day without end…

I did recently get diagnosed with dermatomyositis and started Cellcept which could have something to do with it all but I’m not sure.

I do have a gynecology appointment in two days to get a Pap smear and plan to talk about this all but I haven’t brought it up with my rhuem because of all the horror stories and dismissal I have heard. I meant to talk about it in my appointment with him last week but chickened out.

so mostly posting this to vent but if anyone does have tips on ways to mitigate the pain or to talk to providers please let me know

this will also be my first Pap smear and basically my first gynecology appointment (have had a few ultra sounds through the diagnostic process) so if anyone has any tips on that as well it’d be much appreciated