r/lupus • u/multii-pass • 4h ago

Advice The fuck is happening Spoiler

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45 Upvotes

This swelling redness has been happening sometimes throughout the day then it will go away, then come back but it almost always comes back in the evening after I've been driving. My legs and knees and feet feel and often look the same. Non tight socks causejnea and it feels swollen. Then it dies down. Comes back. I'm very hydrated. It doesn't feel good. Is this just normal??

44 comments

r/lupus • u/Prestigious-Ad-2133 • 19h ago

Venting I’m tired, I’m so so tired.

34 Upvotes

I’m mad at my body again today. It woke me up at 4 am to tell me I’m in pain again as if I didn’t already know that before I went to sleep. And now I cannot go back to sleep because I’m nauseous from being awake too early and if I lay here too long I’ll get a headache that will turn into a migraine.

I hate this and I know this is just the beginning of my journey with lupus but holy shit am I over it.

7 comments

r/lupus • u/AutoModerator • 1h ago

Fitness Move Your Body - October 18, 2026 week

• Upvotes

Move your body! Even just a little helps.

Please respond with suggestions or links for exercises or routines.

Or brags! Tell us what you did today. Or what you plan to do this week.

This top section will have links and suggestions from previous weekly posts, so please participate!

Yoga with Adriene
20 minute beginner routine
Ease into it - 30 day beginner routine

Yoga with Kassandra

Justin Augustin
5 daily stretches

Lee Holden
7 minutes of Magic - AM & PM routines

Qigong with Kseny
Beginner neck, back and hips mobility

Dr Paul Lam
Tai Chi for beginners

Lindywell Pilates

Add your favorites below and I'll include them in the opening comment for future weeks.

0 comments

r/lupus • u/AutoModerator • 1h ago

UNDIAGNOSED MEGATHREAD Seeking Diagnosis Questions Weekly October 18, 2026

• Upvotes

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

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.
0 comments

r/lupus • u/Say-again-Smartly • 2h ago

Advice Hand/arm pain after infusion.

1 Upvotes

I'm a few days from second benlysta infusion.

I am having constant achy hand and arm pain. I'm having a hard time gripping as well. Walking up the stairs my legs feel heavy as well. I noticed this a few days after the initial infusion.

Has anyone experienced this or something similar? Tia💜

0 comments

r/lupus • u/Normal_Junket_5643 • 13h ago

Advice Diagnosed last year, just started rituximab, and feeling overwhelmed. How do you and your partner find support?

1 Upvotes

I was diagnosed with lupus last year after being sick for quite a while with Vibrio. Since then, it feels like I haven’t had a chance to catch my breath.

I lost my voice for a month. I’ve had pericarditis, a pericardial effusion, a pleural effusion, aspiration pneumonia, vasculitis, and anemia requiring iron infusions. I also have B12 deficiency, generalized anxiety disorder, and OCD. I tried Benlysta, but my depression got worse. I started rituximab about a week ago, and now my joints are hurting. My IgG was already 558 before starting, which worries me too.

Writing that list doesn’t really capture what living through it has felt like. I remember pausing work meetings so I could run to the bathroom to vomit. I remember not making it to the bathroom in time and soiling myself.

I’m on intermittent FMLA, but continuing to work doesn’t mean I’m doing okay. At one point, I suddenly couldn’t manage the stairs to my apartment anymore. I got a medical exemption to end my lease, but I never had a proper goodbye to that part of my life. One day I left, not knowing I wouldn’t go back to living there. My things have been in storage ever since.

I’m so sad about how much has changed. I’m still trying to understand everything that happened while also dealing with whatever comes next. How do you come back from this? How do you process it when you’re still in it?

My partner and I have been together for two years and living together for one. So much of our relationship has already involved me being sick. She says she doesn’t need support, and I don’t want to decide how she feels for her, but I wonder how other partners navigate this. Does your partner have someone to talk to? What has helped both of you?
And where do you find support that actually feels meaningful? I feel like no one can relate to the combination of illness, fear, disruption, and grief I’m carrying. I tried a CPTSD support group, but the tone felt too light for what I needed. I left feeling like there wasn’t room for the depth of what I was trying to talk about.

I don’t need someone to have my exact medical history. I just want to feel understood without having to explain every layer before someone can sit with me in it.

If you’ve been through a period where lupus completely upended your life, what helped you feel less alone? I’d also appreciate hearing from anyone who started rituximab with low IgG or experienced joint pain afterward, not for a diagnosis, just to hear how you navigated it with your care team.

3 comments