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.

I got sick in 2023, diagnosed in 2024, flared in 2025 and 2026. Finally stable about halfway through 2026 but am worried I’m beginning to flare again since my flu shot. As soon as I feel the crippling fatigue creeping back in, reduced exercise tolerance, needing to constantly lay down, struggling with work and being a mom I just begin to absolutely spiral over the fact that I can’t keep up and I have to rest.

I’ve always been a high achiever.. it became worse in my 20s as a trauma response because of an abusive relationship. I’m starting therapy to try and unlearn that my worth is tied to my productivity. But regardless, I really mentally break down when I lose the ability to work out, perform well at my job (bedside hospital position), be 100% present for my son, and keep up the house, groceries etc..

I know I can’t help that I’m sick and I know I need to rest but every second of rest that feels forced on me because I’m unwell makes me want to rip my hair out and scream.

I know there might be a light at the end of the tunnel soon because I don’t think the flu shot will put me in a full on flare, my labs are still okay, and I NEED iron infusions which I’m working on getting scheduled now. But I am crying literally every day, lost all interest in my hobbies suddenly (mostly because I’m tired but also because I feel defeated), and I’m literally just doing the bare minimum and struggling with that.

I don’t know how to rest without feeling guilty. I don’t know how to let things go - do bare minimum at work, be more minimal with my routines and stuff with my son, skip the gym, etc.. it makes me so depressed to not be able to do these things. Has anyone figured out how to make these periods of time any easier? I’m about to start smoking weed again because I can’t deal. I quit weed back in June because my pain was so well controlled and I was able to live life more normally thanks to Imuran. But now I just want to get high again because at least when I’m high I don’t sit there and feel guilty 100% of the time when I’m taking it easy.

Any help or encouragement would be much appreciated.

Hey folks. My lupus seems to cause a whole lot of painful lymph swelling sometimes. I’ve had so many scans and ultrasounds, and we’ve determined it’s totally benign. Still, it’s a big pain.

How do yall deal with it? DIY lymph drainage massage helps a lot, but it takes a lot of time and has a lot of steps. Not sure how much heat is helping.

Remission question! Am I heading towards remission or can it just happen to jump around. Currently on Saphnelo, Prednisone, and Plaquenil. On my 4th infusion. Just wondering if I’m getting excited too fast. I’ll post the question below it wasn’t letting me lol 😆

There is literally the perfect drug target that would help most autoimmune diseases and no one is even working on it. I did a search and could only find one research institute. I worked for big pharma and they said “No!”.

95% of adults have been exposed to EBV and it stays in your body forever.

This becomes a huge problem for people born with specific genetic variants, specifically:

*Two variants in the major histocompatibility complex (MHC) are highly associated with whether you will get an autoimmune disease or not

*Hundreds of variants that are associated with determining which of the autoimmune diseases you will be more prone to

Even inactive EBV releases a protein called EBNA2. EBNA2 acts similar to transcription factors and even super transcription factors to cause a cascade of gene expression changes.

This was shown in silico using DNA chip experiments (Harley, 2018). They found that 50% of systemic lupus erythematosus risk loci were bound by EBNA2. Similar EBNA2-anchored associations were found in multiple sclerosis, rheumatoid arthritis, inflammatory bowel disease, type 1 diabetes, juvenile idiopathic arthritis and celiac disease.

In 2025, Stanford demonstrated this was happening in lupus patients. Basically, EBNA2 was being released from EBV infected B cells, which caused them to be re-programmed and drive autoimmunity.

https://med.stanford.edu/content/dam/sm/utzlab/Cao_Sci_Trans_Med_2025.pdf

Most of the other factors associated with autoimmune diseases (stress, colds, flu, grief, environmental factors such as heavy metals, etc.), these have been shown to make EBV infection worse because the body becomes less able to control it.

Lower vitamin D and zinc , also associated with autoimmunity) seem to be caused by the EBV as well. EBV binds to vitamin D and prevents its uptake in the gut. This is from the book Latency strategies of herpesviruses. There is a great 5 min breakdown of the book called ‘5 things you need to know about EBV’.

Here is that link:

https://www.facebook.com/drericberg/videos/1372062696703582/?fs=e&s=TIeQ9V&mibextid=wwXIfr&fs=e

I don’t recommend any of the supplements listed at the end for those with autoimmune diseases. Monolaurin and L-lysine are the two to research

All of this is known. You would think that everybody out there would be working on therapies targeting EBNA2, but sadly no.😢

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!

An eye does this thing every once in a while. (Which eye it is switches...thankfully not both at one time.) It hasn't lasted long enough/been severe enough for me to go to the doctor before it goes away. I just chalk it up to inflammation. I guess I wanted to throw it out there in case someone knows what specifically it is or if I should be going in when it happens. I know the big red flags for eye stuff (I think!) and I theoretically get yearly eye checks due to past posterior uveitis. (I did just have one a couple of months ago, not too long after one of these incidents, and all looked fine.)

My eye just gets irritated-looking (visible capillaries) and I'd describe the pain as being around it. It feels like eye socket pain; this time it's just on the upper, outer side. It hurts a little to blink, like it's the muscles controlling my eyelid that hurt. No tearing or discharge, no real light sensitivity. Sometimes the greater area around my eye will swell a little. (Especially the bag under my eye) I have experience with anterior uveitis, keratitis/corneal ulcers, blepharitis--it's definitely not the latter two. And no light sensitivity. My eyes never test as dry.

Any thoughts?

I would love to hear what medication has helped you for low grade fevers. I have been struggling with this continously for more than two months now and had to stop working because I was so fatigued. My energy is a bit better, so I started working last week.
I am only on plaquenil right now and I feel it is not enough.

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?

I am morally against subscription models and I wish more people would join me. I think it’s especially gross to make people pay a subscription fee to have access to someone geared towards those who are disabled/chronically ill as we don’t typically have lots of extra money.

I am fine with paying a one time fee for an app and obviously I would pay for a device. I am not sure if I want it to use heart rate or heart rate variability but I need something that will help me stop randomly using up all my energy halfway through the day. I have seen things like “visible” and they look great but I don’t want to pay monthly.

So I am asking the wolf pack, what have you used to monitor you daily physical activity and help place yourself?

Hi everyone, I was started on MTX recently. They started me on 15mg, and I was supposed to increase to 20mg a few weeks ago. This was postponed due to the side effects I've been experiencing (they're hoping my body will adjust with more time, and then I'll go to 20mg).

Seeing how my body has responded so far with the side effects, I'm quite worried about hair loss. I've seen quite some mentions of hair loss while on MTX on here, but hardly ever with what dose people were on. Additionally, I've seen mostly lower doses of MTX mentioned and not 20mg.

My question therefore is: could people share what dose of MTX they were/are on and whether they experienced hair loss or not?

I know that whatever trend emerges from the replies here doesn't prove anything, but I am curious anyway haha. Thank you!

(Edit to add: I am on folic acid!)

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?

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.

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. 😞