I was diagnosed with lupus and sjogrens last year, this year I was diagnosed with endometriosis and pelivc floor dysfunction. When I was first diagnosed with lupus and sjogrens my relatives and partner were supportive and sympathetic. I would be open and honest about what I'm feeling and going through whenever asked 'how are you feeling?' 'Are you feeling okay?' Then the flares and symptoms started happening more frequently and that sympathy and support turned into ableism.

Now my partner makes comments about things not getting done around the house, asks for sex even after telling them I'm in pain, exhausted, etc. and when I am able to do housework they are patronizing/condescending. My mother in law, who helps me take care of my high support needs autistic child, is now questioning my ability to be a mother. Saying things like 'with all your problems, are you sure you can handle this?' But when I try to leave her alone with my child and get the rest my body needs, she's calling me to help/save the day. My own mom is sympathetic but extremely busy, so all she can really do is say 'I'm sorry, I wish I could take this suffering away from you.'

So, I've just opted to not really talking about my symptoms anymore. Usually just saying things like "I'm fine," or "I'm just really tired," when asked if I'm okay and try to power through things. I feel unheard when I tell them about it, so why even bother telling them what I'm going through. I do still tell my partner when I'm in pain but they still don't really acknowledge it or does/says things that imply that I'm being lazy.

Whether I tell them or not, my mental health still takes a hit and it feels never ending. So, what does it really matter, right?

I’m visiting my long-distance girlfriend for the first time in six months. We’ve been together for almost a year, and during previous visits she has been incredibly understanding about my inability to have sex because of both pain and the trauma from my last relationship. I just wasn’t physically or emotionally ready.

I’ve now been on Benlysta for a while, and taking a muscle relaxer at night has helped me sleep better and reduced my morning stiffness. Between the decrease in pain, getting proper rest, and finally feeling emotionally ready, I feel like I’m in a place where I actually want to have sex.

Since we started dating, I was also diagnosed with hidradenitis suppurativa. Unfortunately, I triggered a mild flare on my pubic mound by shaving the other day because, for the first time in years, I wanted to feel sexy. It’s only a couple of small bumps under the skin, nothing open or infected, but it has really shaken my confidence.

I had worked so hard to accept my body, including the stretch marks, the scars from lupus, past dermatillomania flares, the injection marks, the weight gain from medications, and everything else. Having something new appear the day before I leave has left me feeling rattled.

I guess what I’m hoping to hear are stories from people who have fulfilling sex lives while living with lupus, or from those whose partners genuinely don’t care about the scars and changes our bodies go through because of chronic illness.

My girlfriend treats me like a goddess and she says she won’t care, but I think we all know we can get in our heads anyways.

I worked hard to fade my scars with treatments, lost 10 pounds, and finally got myself to a place of cautious confidence. Now it feels like that confidence has been knocked down all over again.

I’ve been diagnosed for about a year now, I’m 23. I’ve been taking my meds, doing good (for the most part). I go to the gym 5 times a week, I’m grateful to be working a full-time job. I’ve had a couple of flares since diagnosed, nothing major. But a couple weekends ago, my friends wanted to go tubing. For those of you who don’t know what that is, during the spring and summer you sit in inflatable tubes on a river for several hours.

The whole experience was a humiliating. I’m 23 years old, I’ve only ever worn bikinis and board shorts in the water, but now I’m stuck wearing a full body suit looking like an extra in the movie Soul Surfer and a giant sun hat. I diligently wore sunscreen, stayed covered and cool, but it didn’t matter. I still pushed it. 5 hours on the water cost me 4 days of flair up pain and fatigue, including some new and fun additional issues I get to talk to my doctor about. I used to love going tubing, I used to love going outside and being in the sun. Growing up, my mom would joke I was a little lizard, because I’d lay outside just baking on the concrete, because the sun felt good.

I get these are first world problems, and so many others who have this illness experience so many worse problems than I do, and I’m grateful I don’t have it more severe. But this was the first time I’ve had that hard check of reality since being diagnosed that I can’t be the same person I was, and that things aren’t going to go back to the way they used to. And it sucks. It really really sucks.

I haven’t been able to vent to anyone, only 8 people in my life know I have this, because I’ve been so embarrassed and I’ve always been “fine” or “healthy”, so I needed the space to vent.

Newly diagnosed here and trying to orient myself regarding sun safety. I began treatment recently and have been avoiding being outdoors 10-4. But the UV is very strong before and after then as well. Curious do you follow a UV threshold for when you feel comfortable going outside for a walk?

I just got confirmation that the lupus has began to fuck my lungs. I am starting Cellcept and possibly Rituximab if Cellcept doesn’t work. and weening off prednisone, but staying on HDQ. 60mg of Prednisone daily is the only thing that seems to be working. I have been hospitalized 6 times since December, twice with Lupus Pneumonitis/ acute respiratory failure. I was supposed to start Benlysta but the ILD clinic said it won’t help protect my lungs. Does anyone have experience with Cellcept? I’m exhausted from it all.

This summer has been especially brutal. I haven’t even been out in the sun but the heat in general everywhere I think is just draining me. It has been difficult to be productive, the fatigue is crazy. I have been on steroids the last few weeks and it doesn’t seem to be helping much. Any suggestions welcome.

I already wear 50+ spf everyday and hats. I am in Texas, so very hot. Hopefully can move to milder climate in the future.

Hey, I just found out I have SLE. I’ve been dealing with random flare ups, joint pain, and extreme fatigue for a while, so it’s a bit of relief to finally have answers, but I also feel pretty overwhelmed and defeated.
I’m 25 and very active, so I’m worried about how this will affect my energy and lifestyle moving forward. I know it can be unpredictable, which is honestly scary, but I’m trying to take it one step at a time and focus on learning how to manage it.

My wife tested positive for covid twice (home tests) and i tested negative both times. however she started having symptoms on wednesday night and i started having symptoms on Friday morning.

We scheduled lab testing through cvs to get an accurate result and i’m hoping that i will test negative again but im not sure if that’s what’s going to happen given the fact that im having symptoms. I looked up things that i could do to help if i do have covid and i heard of paxlovid but then i also read that it has to be administered within 5 days after symptoms appear but if i find out until monday (cvs has a day turnaround for testing i believe) im afraid it’d be too late to get paxlovid. (im also uninsured so that would also depend on whether i qualify for assistance or not).

I’m terrified and extremely anxious. I want to feel hopeful but it feels impossible. this feels like a nightmare. please help me with any advice or any bits of hope i could use. thank you

I am a solid year past my big, nasty ass flare of cutaneous lupus that then lead to urticarial vasculitis all over my everything (AKA legs, then torso). And I have had flares, tiny and big, off and on since then.

I love a good medical journal- especially a review article that can give me percentages. Here the only percent I can find: 40% of people will no longer have symptoms within the first year. Cool, thanks for nothing with that piece of info- how about the 60% (the majority of us) who continue to have symptoms beyond a year? What does that look like for us?? For-ev-er…? 5 years? 7-10 years? And if the answer is: suck it up buttercup, the future is unknown and no one can give you an answer! That’s fine. That the real answer, I know that. I’m just curious what other people have experienced.

Also- I am one of the “not as common” with lupus but also with normal complements - so normocomplementemic urticarial vasculitis (NUV) with lupus. For just over a year. And flared up the last few days and making me sad about it.

How long have you had UV flares?

This is a weekly thread for those who haven't been diagnosed, but still have questions about the diagnostic process. Please read the posting guidelines and rules! Everyone is welcome to contribute, and this is a safe space.

QUESTIONS ARE LIMITED TO 200 WORDS

____________________________________________

Please read this before posting as it may answer some of your questions:

If you use the search bar at the top of Reddit and make sure it’s set to r/lupus, it will search just the subreddit for your keywords. That way you can get the full breadth of questions and answers.

Positive ANA does not equal lupus!

While more of a rule out screening (negative ANA = very unlikely to have SLE).
Upwards of 15-20% of healthy individuals in the population at large will have a positive ANA. Only about 10-15% of people who have a positive ANA will later be diagnosed with SLE.

Tests used in diagnosing lupus

• ENA Panel - Extractable Nuclear Antigen panel, usually automatically done if ANA comes back positive
• anti-dsDNA - anti-Double Strand DNA is sometimes automatically tested for, but may need to be ordered separately. This test, when highly positive (2-3 times max cut off at least) is almost exclusively seen in SLE. However, only about 30% of SLE patients have this antibody. It's great if it's there to confirm diagnosis, it does not rule out diagnosis if it is absent.
• anti-Sm - Anti-Smith. Typically included in the ENA panel. This is another antibody, that when highly positive, almost always means SLE, but only about 25% of SLE patients have this antibody.
• RNP - Anti-Ribonucleoprotein. Typically included in the ENA panel
• anti-chromatin - Anti-chromatin is a relative newcomer in diagnostic testing for SLE and probably will NOT be ordered automatically. Its exact utility in diagnosis is still being determined.
• Apl panel - Antiphospholipid Antibody Panel, which consists of 3 tests:
  • LA - lupus anticoagulant
  • aCL - anti-cardiolipin antibodies
  • Anti-β2GP - anti-beta 2-glycoprotien antibodies
• C3 - Compliment C3
• C4 - Compliment C4
• CH50 - Compliments, Total. These are part of the compliment system, which is a tertiary part of the immune system.

General blood tests

• CBC - Complete Blood Count, some abnormalities in WBC, RBC and PLT counts can be significant.
• CMP - Comprehensive Metabolic Panel. Generally looking for kidney dysfunction (GFR, BUN/CR).
• ESR - Erythrocyte Sedimentation Rate, this is a nonspecific inflammation marker.

Also, if you suspect you have a rash, getting a biopsy of it done at a dermatologist’s office can be helpful as the pathologist can identify histological evidence of lupus.

Diagnostic Criteria

https://preview.redd.it/nt28r2xltg2g1.jpg?width=532&format=pjpg&auto=webp&s=71abad553270ba8298dc274f96c5e6ee83690fd8

Diagnostic Process

Lupus Diagnostic Criteria on r/lupus wiki (ACR 2019 criteria)

The rheumatologist/PCP will take a detailed history. I highly recommend writing down as many of your symptoms as possible, especially focusing on the symptoms you have that are in the American College of Rheumatology diagnostic criteria for lupus - see link above.

Write down how long they’ve been going on, anything that makes them better or worse, and how much they impact your life. Do they prevent you from dressing yourself, eating/cooking, bathing yourself, doing hobbies, meeting your obligations?

Anti-dsDNA is more indicative of disease activity and can be elevated prior to and during a flare. Symptoms can also come and go, and over time you may develop additional symptoms. If you scroll through the last week of posts or so, there are a few posts that will have pretty detailed answers to your questions from multiple community members so you can get a better sense of just how full on fickle lupus can be.

Here are some good posts, one is othe

r people experiences in general, the others are rashes (warning: some are particularly severe):

User community diagnosis experiences
This is a malar rash
Photosensitive Lupus Rash
SLE Malar rash

QUESTIONS ARE LIMITED TO 200 WORDS

• Shorter questions get more feedback
• Use ChatGPT to summarize your question if you don't know what to leave out

Question guidance

• Don't ask us if you should see a doctor. Go see a doctor.
• Don't ask us if you have lupus, if it sounds like you have lupus, if it looks like you have lupus, if it might be lupus, if it could be lupus, or if we think you have lupus. Don't ask us if you should be tested for lupus.
• Don't tell us your entire medical history and say, "Thoughts?"
• Don't ask us about seronegative lupus. Everyone thinks they have it.
• Don't give us a long, exhaustive, detailed breakdown of your medical history. Particularly childhood illnesses.
• Don't paste a list of 27 symptoms
• Don't ask us to interpret labs.
• Don't ask us to identify your rash. See a dermatologist.

Ive been methotrexate for almost 3 months now, 2 months ago upped the dose to 8 pills a week , super nauseous couldn't eat anything unless I took a gummie. Finally got approved for the auto injection , took it last Tuesday (my husband fucked it up an i didnt get the full dose) but I am so fucking itchy , some hives in odd places, one on my wrist ,shoulder, belly, under my boob an a few spots on my legs. Is this cause it got messed up or?? I don't see my rhem for another 2 weeks so waiting it out. Ive had the injection before when I was a child from 5 to 13 (now 25) an it definitely wasn't like this when I was a kid so 😂 do i just wait this out till i see my doctor orrrr is this something more serious? IVE GOOGLED IT but ill out myself into a spiral if I keep googling

I have recently been diagnosed and just started on hydroxychloroquine + prednisone (200mg and 15mg pred). Based on my labs and symptoms, I think I seem to fall into the moderate disease activity range. I have been experiencing symptoms for the last 8 months

- labs over the last few months (High >300 dsDNA, very low complements, low WBC, leukopenia)

- symptoms (rashes, hair loss (80%), chest/rib pains (which were currently investigating with echo, ecg, cardiac mri), joint pain (which isn't completely controlled prednisone I'm still experiencing minor aches), fatigue, brain fog/cognitive slowness, memory, word recall etc, petechiae, tingling/pins/needles)

My rheumatologist wants to give the HCQ+pred combo 3 months to see how I respond before considering adding an immunosuppressant (like MMF or methotrexate). She's also referring me to a colleague for a second opinion, but I won't get that appointment for another 3 weeks.

I've been reading up on treat-to-target approaches and hearing from some webinars that earlier combination therapy (adding an immunosuppressant sooner rather than waiting) can help control disease faster, reduce organ damage risk, and shorten prednisone duration. That's making me second-guess the "wait and see" plan and raising my concern and anxiety levels...

For those of you who've been through something similar:

• Did your team wait on HCQ alone first, or start immunosuppressants earlier?
• If you waited, how did that go — did you end up needing to escalate anyway?
• If you started immunosuppressants early, do you feel it made a difference in your long-term course?
• Any questions I should make sure to ask at my second opinion appointment?
• since this is a progressive disease wouldnt we want an immunosuppressants to be started earlier to control the disease activity?

Thank you all!

edited a few points here.

I’m a 22 year old woman, I’ve been on 400mgs of Hydroxychloroquine and Lupus flare free for roughly ~3 years and I would say my daily average pain level sits around a 1 out of 10 - which I’m aware is an immense privilege when living with this disease.

I guess I’m wondering: what is my risk of having to go on immunosuppressants? I so deeply want to go work in clinical maternal medicine - specifically my dream would be to travel around the world and work in Global Maternal health. My deepest fear is not that the plaquinel will hurt my eyes or anything - it’s that I’ll have to get off the plaquinel and onto something more taxing on my immune system.

This year, my mother and I were offered the opportunity to go to Sierra Leone to see the expanding maternal health system there - we ended up not going due to previous commitments- but I also would have been unable to go due to the increased risk of picking up TB (and then later the risk of picking up Ebola).

I guess I’m just questioning my entire future and career path - and now that my disease is so stable, it feels like maybe I’m holding myself back unnecessarily- but then ofc I enter a minor flare and convince myself that my anxiety is correct 🥴

Just looking for advice for folks that have been through this before :)

edited for clarity

Editing again to say thank you so so much for all the insightful comments and for sharing your experiences!! This whole thread has absolutely renewed my hope for a productive future despite potentially being immunosuppressed. Thank you all so so much.

How much do you consume, if any at all? Effects?

Buenas!

Alguien sabe de qué manera te puede afectar a los ojos el consumo de este medicamento? O sea, qué se empieza a sentir? Cuándo debo preocuparme?

A veces siento que veo peor, menos nítido. Pero, los años pasan y también pienso que pueda ser cosa de la edad (tengo 29 y llevo tomando desde los 14). No quiero decirle a mi reumatólogo aún, pero sí me gustaría saber de alguien que tuvo que parar el tratamiento por eso y cuál fue la solución. También me gustaría saber si eso es reversible.

Añado que me hago análisis y pruebas de oftalmología una vez al año y nunca me han dicho nada desfavorable.

Gracias!

Hi everyone. I (25F) was officially diagnosed with lupus yesterday, and I'm still trying to process it.

I went into my rheumatology appointment
expecting to hear I had UCTD. Despite having a science degree, I somehow misread my own lab results (brain fog is very real 😅), so I was genuinely shocked when my rheumatologist said something along the lines of: the autoantibody pattern they often see with UCTD was not present in my case, and given my symptoms plus positive dsDNA, she strongly supported lupus.

I was also surprised because I had spent years minimizing and explaining away my symptoms for one reason or another. I wasn't validating how much they were actually affecting my life. I'd become completely blind to what my own normal had become.

Looking back now, the signs were all there.
I used to run collegiate cross country and regularly ran 40–50 miles a week. Running wasn't just something I did—it was a huge part of who I was.
Then I got COVID in 2021 when I was 21. I'd had whooping cough as a kid and missed weeks of school because of it, and COVID was still unlike anything I'd ever experienced. I could barely move.

I never really felt the same afterward.

Since then, I've steadily declined and have been pretty much housebound for the past few months.

I kept thinking it was me somehow. I thought I was running less, eating the wrong foods, too stressed, not exercising enough. I tried everything I could think of to rebound: cleaning up my diet, figuring out food intolerances, reducing stress, forcing myself to exercise, even though I'd often end up sick afterward or my joint pain and fatigue would become unbearable. And the brain fog😮‍💨… the constant cognitive fatigue. I kept going to my doctor but they were very insistent that they thought it was something mild or induced by not exercising as much, even though I had symptoms pre-covid and the reason I stopped exercising was because of my symptoms.

The more I look back, the more I realize lupus had been quietly changing my life while I kept finding reasons to explain it away.

I've started hydroxychloroquine, and I'm hopeful it'll help with time.

Main question:
I'm an avid reader, so if anyone has favorite books, podcasts, websites, or other resources that helped you after your diagnosis, I'd really appreciate recommendations. And if there's anything you wish someone had told you when you were first diagnosed, I'd love to hear it.

I also plan to post separately later about dysautonomia symptoms I’m dealing with and hair changes/loss, since those feel like their own topics.

Still digesting finally having an answer after spending so long searching for one.

I'm looking forward to learning from all of you.

TL;DR: 25F newly diagnosed with lupus after years of slowly declining health and searching for answers. Labs and symptoms confirmed it. Still processing and looking for tips/resources.

I was diagnosed with Sjögren’s and discoid lupus but I don’t think it’s discoid lupus I think it SLE as my rheumatologist said he would not diagnose me with SLE as it will take 10 years off my life. I’m just abit lost as I have to wait 6 months for a rheumatologist appointment as I’m under the NHS, I’m also having a very bad flare up as the weather In England is really hot right now and it’s unbearable.

Hello all! I was just started on hydroxychloroquine a few weeks ago. I've been experiencing worse and worse itching for the last several days. It feels like being stung by nettles. Antihistamines and topical are useless. Has anyone else experienced this and how did you cope?

So I get this specific pain once in a while, it’s on the right side of my shoulder blade and it runs all the way down to my right side rib when I breath it absolutely kills feels like a hot knife being dragged through my right side, Not sure if anyone else get these weird pains. And wanted to say thanks to all the people who gave advice on my last post much appreciated thanks again❤️

What do you guys do to alleviate muscle aches/body aches? I have tried magnesium cream, massage gun, heat pad, cannabis, meloxicam and nothing works. Do you just rest and wait for it to pass? I’ve been stretching and trying to move if possible but I’m in so much pain.

Also side rant but F lupus for deciding to flare up on my birthday. Feel like i got hit by a bus. I hate this disease so much.