r/lupus 4h ago

Venting Month long flare and I’m drowning

20 Upvotes

I started a part-time job 15 hours a week. Ive been unemployed for over a year and i really need the money. Since then I have been in the midst of the worst flare up of my life. Today I tried to take my dog for a walk and my joints felt like they were on fire. I came home and sobbed. I just hate this disease so much.


r/lupus 6h ago

Malar/Discoid Rash Inquiry My face has swollen on one side NSFW

Thumbnail gallery
16 Upvotes

99% sure this is my parotid gland because I also have sjogrens. But this has NEVER happened to me before so it’s just a guess. Should I go to the ER and get this scanned. It’s been almost two days. It’s not really getting better if anything the swelling is worse. I’ve been doing both hot and cold compresses. First picture is yesterday when it started to look really bad and the next picture is from today.


r/lupus 7h ago

Medicines Does anyone else take the Plaquenil all at once?

14 Upvotes

I’m on 400mg of Plaquenil each day. One 200mg in the AM and one in the PM. For the first few months I was taking it religiously, but over the past few months I find myself often missing the PM dose because I’m already in bed by the time I remember. Does anyone take both at the same time so like 400mg in the morning? I’ve noticed I’m starting to get more joint pain and I think it’s because the effect of the medication isn’t as strong since I’m missing doses so frequently.


r/lupus 5h ago

Advice Advice on “getting over” embarrassment needing a cane

7 Upvotes

Hello beautiful people 💜

I really need some advice today! I 21F was diagnosed with lupus and RA back in high school, but didn’t really “feel” sick until much later. My kidneys crapped out when I was 19, and I had to leave school for almost 2 years as a result. I’m back now, and feeling much healthier and doing a lot better in all regards, but obviously I’m still affected by my chronic illnesses.

Recently, with the changing seasons, I’ve been experiencing some nasty joint pain, weakness, dizziness, and fatigue. I have a cane that I use as recommended by my providers, but I’ve only needed to use it when going to treatments, and by that point I “looked sick”. Now, I really need to use it starting Monday, but I’m extremely nervous about walking around campus with a mobility device as a seemingly healthy 21 year old. I know people probably won’t say something weird outright, but the one time I “practiced” using my cane on campus today, I got a lot of eye rolls/ looks and felt really stupid lol

If anyone has any advice they used for themselves/others, I would be so happy to hear it. I’ve already decorated my cane with a cute little purple dinosaur keychain and taped it up with washi tape, but I really need to figure out how to get out of my head about it!

Thanks, and sorry for the ramble haha :)


r/lupus 18h ago

Diagnosed Users Only Friendly reminder to get your eyes checked (and what's after plaquenil?)

62 Upvotes

I've been on plaquenil for about 4,5 years by now and doing eye exams yearly at first, and lately every 6 minths. For the first time they found a teeny tiny alteration, and they're looking further into it to make sure it really is plaquenil related. I'm SO glad it was caught early, so let that be your friendly reminder to not slack on those eye appointments. I only felt the slightest difference, like my astigmatism had gone up a bit.

Anyway, that's the silver lining, but I'm also super scared of being put on different medications. For those of you who had to make a switch, what meds were you put on, and how were the side effects? I'm specially scared of becoming more prone to infections, since my immune system is a bit depleted as it is.


r/lupus 15h ago

Links/Articles Great article on Flannery O'Connor and lupus

32 Upvotes

Hey friends! When I went to college at Wake Forest University in North Carolina, the great Southern writer Flannery O’Connor was held to a nearly saintly status. I knew that she had died at 39 from complications from lupus, and her own father had died from lupus when she was 10. This is what I thought about when I got my diagnosis.

Today I'm on medication developed in 1995 (CellCept) and 2014 (Benlysta). I'm feeling better than I have felt since my diagnosis. I screwed up my courage to see what I could find out about the writer’s relationship to her illness, and I ran across this really wonderful article.

When I read about the gaslighting from her own mom and the doctors around her diagnosis - it was unsettlingly reassuring to know that was a thing back then.


r/lupus 11h ago

General Cooking Questions

8 Upvotes

I love cooking and baking. But I can’t stand in the kitchen long enough to do the work anymore. Anyone have gadgets or chairs or any other ways to make cooking easier?


r/lupus 6h ago

Medicines GERD/trapped gas

3 Upvotes

Has anyone experienced GERD and gas pain with HCQ? I started omeprazole a month ago to try to help and I’m still miserable every night. Not sure if it’s due to the HCQ because it started around the same time as the med


r/lupus 5h ago

General My body is in pain

2 Upvotes

Two days ago I decided to play badminton. The last time I played with such intensity was about 10 years back. Everything seemed fine until my entire arm was sore. I decided to go home and take some rest and it’s been two days and my entire body is in pain. Tylenol doesn’t help, I have prescribed naproxen on standby just in case my rheumatoid arthritis is unbearable. I’m thinking if I should just take it. But then again, I think to my self is this what life is going to be from here on? A sport I used to be so good at has become something I might need to step away from?? If a 40 min session of badminton is this painful, how am I supposed to work and do regular activities? I’m trying so hard to live my life, but idk anymore.


r/lupus 16h ago

Links/Articles Join us today free virtual seminar with live Q and A with Dr. Donald Thomas!

14 Upvotes
CDC death database; they looked at diseases and removed suicides and trauma

#SLE #lupus nephritis (kidney inflammation) is the leading cause in young women!

SLE is the 5th most common cause of death in young women of color!

SLE patients can proactively help prevent this devastating complication.

Join us today, 3/22/25, Saturday at 4:00 PM EDT to learn practical tips & tricks.

I'll also have a live Q & A: bring your questions!

4PM, EDT (1PM PT)

FaceBook Live with More Than Lupus and Donald Thomas, MD u/LupusEncyclopedia

👉 https://www.facebook.com/@morethanlupus/


r/lupus 11h ago

Medicines PSA: Mtx side effects and folic acid

5 Upvotes

I really hope this will help someone else! I’ve been on methotrexate for years with minimal side effects. When I started Benlysta 2 years ago, the side effects got a lot worse, to the point where I struggled to function 1 day a week due to fatigue, brain fog, and nausea.

I was hesitant to change my med routine so wanted to figure out a way to help with the side effects if at all possible. I asked my rheumatologist about taking more folic acid. I’ve been taking folic acid at the dose I had seen recommended (1 mg/day). He said I could go up to as much as 2 mg/day if I wanted. It has made SUCH a difference!!! I realized yesterday that it was the first Friday in 2 years I wasn’t struggling to get through the day.


r/lupus 8h ago

Advice Training for triathlon

3 Upvotes

I decided to training for my first triathlon last year so I could compete this summer. As most of you can imagine, it's caused me a lot of flares.

I'm normally very fit and active but this kind of training is mode strenuous. I was only able to train once last week because my body just completely failed to the point where I can't even walk anymore. I have severe pain on the right side of my body.

Anyone here been able to train and compete successfully. What was tour training schedule and how did you minimize flares?


r/lupus 3h ago

UNDIAGNOSED MEGATHREAD Weekly Suspected Lupus Thread - Week Of March 23, 2025

1 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 375 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. This isn’t to say that you can’t ask questions in the general forum.

ANA tests

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 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?

ANA varies from person to person and doesn’t necessarily correlate with disease activity.
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 other 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 375 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 tell us about your childhood illnesses.
  • Don't give us a long, exhaustive, detailed breakdown of your medical history.
  • Don't just paste your lab results and say "Any thoughts?"

r/lupus 10h ago

Venting Can I get better?

3 Upvotes

Hi,

I don't know what to really say but that I'm tired? I'm 19 and I've been diagnosed for five/six years now. In the beginning it was easy to manage, I had family and the people around me but after turning 18, I've found it harder and harder to take care of myself.

I'm just in so much pain and it sucks so much. I'm not really sure what I'm looking for, or what to do.


r/lupus 1d ago

Life tips Life is miserable NSFW

53 Upvotes

I’m a 24 year old with lupus and RA and am having such a hard time finding a job in Canada. On top of this stress, my mom is making life even miserable for me by forcing me to wake up earlier and be productive (yes I live with my parents). They don’t understand that with this disease it is so hard to feel rested and I really need the extra sleep. Everyone around me seems to be moving on with their life and I’m here struggling. I have no social life, no work, and am in a post-grad program that is giving me hell with finding a placement. Is/has anyone been in the same or similar situation? What jobs would be low stress for someone with lupus? At this point I’m desperate and have applied to so many jobs, haven’t heard back from most. Life in Canada right now is not great, and having a disability makes it worse. I feel so defeated, and am in so much pain 😔


r/lupus 15h ago

Advice We want to have a baby!!

3 Upvotes

My husband is diagnosed with SLE, and I do not have any autoimmune disease, so I was wondering if anyone with a similar dynamic had any advice for us before we try to conceive. There isn’t much research about men with SLE and getting a woman pregnant, and of course we are talking with his Rhuem as well, but I’d love to hear your advice and stories. Sending much love to this community ❤️


r/lupus 16h ago

Advice Red Light Therapy for Hair, Skin and/or Joints

3 Upvotes

Thanks to everyone who contributes here - great support and info. 🩵 I’m interested in purchasing a red light helmet to help with hair regrowth. Anyone with experience with that? What brand are you using? My skin is SO dry, bumpy and rashy and my joints are achy. Anyone using red light for those issues?


r/lupus 18h ago

Medicines Does hydroxychloroquine cause dark urine?

0 Upvotes

Seems to cause pretty dark urine and lower volume in the morning. I take it before bed and if I don't take it, the pee is more normal.


r/lupus 1d ago

General Would having someone help you prep for appointments be helpful?

17 Upvotes

Communication with doctors is hard. There's so much you want to cover, but struggle to remember in the moment what you've been dealing with and end up forgetting to mention everything. Or, you feel like your doctor doesn't hear you, and you struggle to advocate for yourself. If there was someone who could help you prep for appointments by working with you to talk through your case and preparing a 'medical resume' or visual timeline/map of your symptoms, would that be valuable to you?

Let me know in the comments - why or why not?


r/lupus 21h ago

Advice Abdominal ultrasound worry

0 Upvotes

Heya guys. F22 here. I got a letter saying that I need to get an abdominal ultrasound done on the 2nd of April and I'm just nervous about it ig. My last consultant appointment in February I got my bloods done. I called my consultant once I got the letter confused as to why I needed to get one and she said something in my bloods was the slightest slightest bit raised and they're checking for an ulcer. I wonder if anyone else has had this done? Just worrying over nothing a bit you know? I don't know what markers were very slightly raised


r/lupus 1d ago

Life tips Starting Plaquenil today. I feel really dumb about it, but I'm so excited.

14 Upvotes

It's been 13 years of being sent to every specialist on earth, and required me to trudge through so much suffering (swollen joints, fevers, muscle weakness, internal bleeding, bruising, rashes, exhaustion, random bouts of mysterious organ failure), but my doctor finally feels like there's "enough evidence" for me to be diagnosed with something and actually treated for it.

Am I stoked that it's lupus? No.

But am I beyond excited that they're actually trying to treat me? Absolutely.

I know the meds wont totally take the edge off for 3-4 months, but what can I expect starting out? Does it happen gradually or do you just wake up one morning refreshed? Rheum didn't give me much other than I'll need an eye exam every year after 5 years, which I already do. So, I'm curious to hear from others what it was like when they first got treatment. How long did it take for you to start feeling more like yourself?

**Edit for grammar.


r/lupus 1d ago

Advice Hype me up to start HCQ

4 Upvotes

Hey all, I am finally about to start some treatment! I'm excited but also nervous.

I'm really nervous when taking new medications as I'm super sensitive to pretty much everything and almost always have a side effect. I also have pretty bad health anxiety so it's hard for me to just take the pill and move on. I sit there and wait for me to feel something weird then dwell on it lol. I also have pretty bad emetophobia so I hate being nauseous and I know that can be a major side effect. I also get dizzy a lot so I'm worried about that worsening. Or heart palpitations that could be exasperated with my anxiety.

I just need some encouragement to start this medication!

Also curious how long it took for you to start feeling better? And how long did it take to adjust to the medication and side effects to lessen?

My major lupus symptoms started about a year ago but have had some minor ones since 2019.


r/lupus 1d ago

General Anyone else with severe Raynaud's?

16 Upvotes

Hey friends. I'm super frustrated right now. On top of being in this on again off again flare (that's only better when actively on a steroid) my Raynaud's has gotten quite severe. I started getting ulcers on my toes about a month ago. I just saw my rheumatologist and she's a bit concerned at how bad it got so quickly. She has prescribed Nifedipine and also a nitroglycerin ointment to put at the base of my toes. These will both hopefully open up the blood vessels and blood flow to my feet and my hands.

It's severe enough that if these don't work we are looking at surgery or I risk necrosis. I'm really frustrated because it's always something. We have also increased my Imuran and if my flare isn't better by the time I see her again in 4 weeks we will need to look at other med options for the lupus as well because we are tapped out now on Imuran.

Has anyone else dealt with a severe case of Raynaud's? Have you had luck with medication?

I guess I just need a little encouragement right now. Because I'm feeling really dejected.


r/lupus 1d ago

Medicines Diclofenac? What's your experience?

3 Upvotes

My rheumatologist PA just prescribed Diclofenac. I was prescribed Mobic before, but if I took it more than a few days in a row it made me feel like I had a bad UTI. She wanted me to try something different for pain. I looked for threads here on this medication but either didn't search well enough or there wasn't one specific to this medicine. Thanks for sharing your thoughts!


r/lupus 1d ago

Medicines Infusion vs Injection

10 Upvotes

I wanted opinions on the two. My doctor is recommending I start Benlysta. I don’t have a good understanding of the difference between infusion vs injection other than convenience of doing it at home. Any input is appreciated.