When I wake up my goal is always the same...to try to make it through and be careful not to mess anything up. I don't go out of routine because that increases the risk of a flare..I don't try new things because that could cause a flare.. I eat a very strict diet because I don't want to flare..All day every day is pretty much the same.... repeat repeat repeat repeat over and over and over again.

Lately I've been trying to get my body back to normal but it has been a difficult 3 months, just a week ago I got my appetite back, my iron went low and I had a 3 month wound because of lupus, I live up in a northern community in Ontario, where it can feel quite alone living with a long term chronic illness no one understands, and being such a young age at 24, I've been diagnosed since 2018, 7 years of living like this and now it's for the rest of my life, I really do hope they find a cure if not in my life time, another life time, I just needed to vent, it's been a hard couple months and I can't take pain killers rn because I'm on prednisone, n my body is hurting, yikes, thanks for listening if you did, I'm gonna keep going to get my health in check, best I can. Thanks subreddit

Hey everyone! I was recently diagnosed and I have just started on plaquenil. One of the worst symptoms I have is hyperhidrosis. It's obviously bad when it's hot and when I'm overexerted, but it's the worst with any kind of humidity; after a shower I usually have to lie down or I sweat profusely for 30-45 minutes and feel super dizzy. It's incredibly debilitating and is especially awful on top of the severe fatigue I feel.

Anyway, It's only been a few days, and I know it takes weeks to months to build to a therapeutic level, but for the past two days I have been able to shower and mildly exert myself without sweating. From everything I've seen, it doesn't specifically help with hyperhidrosis, and I'm surprised to see any kind of result so quickly. I was wondering if anyone else has experienced something similar with plaquenil or any similar medication?

My husband has had rashes joint pain and fatigue for around a year and his doc got him tested for autoimmune. Came up positive ANA >1:1280 speckled and positive RNP. All other markers are negative. His doc says it’s either lupus, sjogrens, or MCTD. He started on hydroxychloroquine this week. We are honestly surprise given the usual demographic of people who get these but his doc said men are getting diagnosed at a much greater rate now.

My question is what can I do as his wife to help? Any diet suggestions (any advice for garlic, nightshades, etc)? Any convince or comfort items? Any luck with turmeric?

Sincerely a wife who madly loves her husband and wants him to live forever

It’s been about 4 days since I caught what seemed to be a chest cold, but the low grade fevers have been persisting. Everytime I get up to walk, I feel like I’ve been hit by a bus now and can’t seem to do much. Butterfly rash keeps coming on much more intense and painful than usual and I’ve been needing to ice my face and sleep it off. How do you know that you’re not contagious anymore and it’s just your flare up now basically? (P.S. I don’t mean to downplay and say ‘just’ when it comes to flare ups, but I mean that I’m not a walking contagion 😂)

I was diagnosed in June, and as I am going into what I think may be another flare, I am realizing I'm also approaching my menstrual cycle. I definitely over did it last week, didn't get enough sleep and didn't eat well either so those are contributing factors for me.

BUT im looking at my health journal and I'm seeing I flare often before my menstrual cycles.

I saw in previous posts people get a lot of symptoms before and during their cycles as well, but is flaring during cycles a thing? Should I be extra resty during the week before and after my period?

I am trying SO hard guys. I just want more good days than bad.

Has anyone developed kidney or other organ issues more than 5 years after diagnosis? Just curious.

I think I have, but I was wondering if anyone was candid enough to share what they suffered through? It’s embarrassing so I understand if this goes unanswered. Thank you if you share.

So I am being sent to a random doctor next week to have some sort of assessment or evaluation done to determine whether or not I am approved or denied for disability…

I am becoming more and more stressed out as the closer this appointment gets because I’m just not quite sure how some random doctor that I’ve never seen before will be able to just take a look at me and make any sort of determination in regards to my health and struggles with SLE!

As I’m sure most of you can relate, Lupus is truly just a beast to live with in general. Some days aren’t terrible, some days are worse than others, and then some days are wayyy worse than others… And all of my different symptoms/issues tied to the Lupus didn’t just hit me all at once or out of the blue.
For me personally, all of these different health issues, general symptoms, and the overall worsening health came on gradually in the span of about 4-5years before I was officially diagnosed with having SLE last year.

So I’m just really not too sure of what all to expect from this appointment or what this doctor could even possibly be evaluating on me that isn’t already documented in all of my medical charts going back the last few years?

Well, it's official. After telling my rheumatologist about the weird things that happen to me in my sleep, she referred me to neurology. But the backlog at the neurologist was so long she went ahead and ordered an EEG for me herself. During the EEG I had a huge seizure (which I guess was good since they caught it). So it looks like I've been having seizures all this time after all. I don't know if they're from my lupus or if I just happen to have epilepsy too. I know this is a rarer symptom, but could those of you who have seizures give me some insight into what I can expect next? This has me more scared than anything.

What should I be prepared for from the neurologist? Does your lupus medication make these go away, or do you need anti-epilepsy medication too? How do they determine whether it's npsle or if it's just a comorbidity?

Is anyone on any SSRI’s or mood stabilizers and their lupus drugs? Im depressed and crying all the time being disabled and people not believing me. Has anyone had benefits from therapists and the such with dealing with the depression while also just living with the pain. I just don’t think i can mentally feel better unless im just jaded to the daily pain.

How does the community deal with depression caused by just having lupus and dealing with that?

Anyone else experience resting heart rate increasing from their normal and inability to sleep well when first starting Plaquenil/Hydroxychloroquine?

I am a week in on the med. I lay in bed from 10 PM on and I finally pass out around 12-1 AM but then wake up a lot. I get maybe 4-6 hours of sleep although I am in bed 10 PM to 8 or 9 AM. Great sleep routine leading to bed (shower, read, no electronics for an hour, dark cold room, etc.),, sleep on back to avoid pain in joints/muscles, wear ear plugs... noticed my heart rate stays high and does not drop usually until after 3 AM or so (health watch shows me next day).

I did not experience this before the medication. Anyone else experience this? If so, did it subside? My rheumatologist said he expects it to subside over time and is checking Hydroxychloroquine load in my blood December. I hope it subsides because I know how valuable this medication is.

If you experience this, what you do to try to make sleep better?

Hopefully this ends up being a post where I learn some new stuff too. I wish people knew more about neuropsychiatric SLE. It feels like a lot of people, including other people with lupus, aren’t aware that about 50% of us will present with neuropsychiatric symptoms ranging from depression and anxiety all the way to seizures and psychosis.

I realized I didn’t actually have depression or anxiety with my flare ups more under control when I got treated. As soon as I’m not flaring up and my labs are more normal it just disappears. As soon as I flare up all of a sudden I’m an anxious mess and feel empty and sad. But that’s not just mental illness, it’s triggered by the lupus. I also developed cognitive issues, speech issues, and memory problems and nobody told me that could be lupus related. It would have been good to know why that was happening but nobody bothered to explain it.

I wish people were more aware it can be affected by your menstrual cycle because it’s confusing and scary to have neuro symptoms every time you get your period. I kept having seizures and I could not figure out why. I don’t know if doctors aren’t very educated on that part or if they just didn’t think it was important to know but I wish somebody had told me.

I wish I could make people understand how utterly terrifying it is to not know what symptoms might develop next. I’m not just in pain or tired or the other symptoms, I live in fear of what might come next. That’s one of the worst parts, just knowing it’s possible for me to lose an ability incredibly important to me at any moment but not being able to predict when it might happen.

My hips in particular, really hurt when I'm in bed and it stops me from having food quality sleep, which I of course need to fight this stupid disease. Any recommendations on how to not be in pain in bed?

I’m grateful for having such an accommodating job and boss who’s very compassionate, flexible, and understanding. I wfh full time and can clock in and out whenever and split my shifts.. but I need time off to just rest and not work at all because I am sick as hell and have been for almost 3 months which led to my diagnosis of lupus and fibromyalgia.

This flare is absolutely horrible. I’m a fraud investigator so I have to type all day, and that’s so hard because my hands hurt 24/7 and are swollen. It’s hard to even sit in my work chair even though it reclines because my back, neck, and shoulders are constantly in severe pain and sitting there makes it worse. I’ve requested a laptop so I can work from bed and my couch and waiting on approval from HR.

I’ve fallen behind in law school because I’ve been so sick. I have ADHD so I already struggle with focus, but while in this flare, my ADHD meds do not even help.

I’m depressed as hell and need rest. The weekends aren’t enough, and neither is each night.

I haven’t even been able to process this diagnosis mentally or emotionally because I’ve not had the time to and I’ve been working nonstop.

I’m pissed because I’ve been telling doctors all year something was wrong.. shit for years since I was a kid and I’m now 31. I could’ve avoided all of this had they listened to me.

My PTO resets January 1st, but that’s so far away based on how I fucking feel. I’m so sick I don’t even recognize myself. It’s so dark around my eyes. I can’t even cook or clean. I did today and it was a terrible idea and took me forever.

BEING SICK IS SUCH AN EXPENSIVE REVOLVING EXHAUSTING DEFEATING CYCLE. It’s so hard for me not to feel like my life is ruined.

I am in pain 24/7 while awake and sleep. Dizzy, fatigued, running fevers, just barely making it.

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.

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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

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• 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, or if we think you have lupus.
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Hello!

I have LN, I wanted to start a family but I’m in stage 3 kidney disease, I’m on all the bad meds too!

However, I’ve been struggling to get pregnant even before my lupus diagnosis and I know I have to go through IVF. I was just wondering how that works, will IVF doctors help me, do I have to get the ok from Rheumatologist and Nephrologist first so they can see me, do I have to be at a certain gfr, will the meds make my kidney disease worse or make my lupus flare!?

If anyone has gone through this much help will be appreciated!

I’ve been through a course of Paxlovid and a course of antibiotics without any significant improvement. The doc had me start using a nebulizer every 4 hours a couple of days ago. I still can’t sleep laying down due to head congestion. My voice has been all but gone for over 2 weeks and I can’t stop coughing.

I’m not ill enough for hospitalization (thank god), but I’m also not improving and not clearing the virus. Has anyone else been in this spot? How long did it take before you recovered? As you can imagine, I’m sick and tired of being sick and tired.

Is anyone else’s depression worse during flare ups? And if you feel comfortable sharing what medication you are taking to help? I’m on Wellbutrin rn it kinda helps but not as much as I need and the headaches are rough. I also feel so overstimulated during this time and snap very easily and it makes me feel so guilty.

It’s just a beautiful California fall day. My husband is out in the yard and in the shop working or tinkering

Posting because I know there’s nowhere else it would be understood

…. Started feeling better after flare. It took almost the whole week basically bedridden.

Now I know I could slather on sunscreen, put on a wide brim hat wear protective clothing, and go out and enjoy that day and hang out with him

But every time I do, I mean every time I try to do that I end up in so much pain later I wish I could just sit there in the shade and enjoy, but I cannot keep myself from trying to do just a little you know just a little There’s so many beautiful things to do out there

So it’s almost discouraging to feel good enough to do things because you know better than to do them because it’s just gonna make you feel bad

All is well, not gonna rant or cry - just posting so I don’t feel so alone in this As I sit in here, trying to enjoy how good I feel - I could never have guessed this would be my life I think I’m gonna let myself scratch my arms for a little bit carefully I hope someone gets that lol

What did you do this weekend? Oh I allowed myself to scratch my arms with my fingernails carefully without breaking skin 🤗

Happy Saturday you guys. I hope you guys are all having a good weekend for those of you are not (((hugs))) to you

I could be totally fine (no pain) and take a shower and half way through the shower my joints start to ache. My hips feel like they’re breaking and my knees just about want to give out on me

Literally so exhausted and tired of doing anything. I’m in grad school full-time, working 20 hours a week, try to exercise 2-4 times per week, and live independently with a roommate and 3 parakeets. I love my degree, job, pets and friends, but holy shit I am so tired. I feel like I’m actively withering everyday but somehow still functioning?

My body feels like it is begging for sleep, and I sleep 8-10 hours every night but it’s never enough. I wake up and I’m tired. I lay down and I’m tired. Everything hurts and cleaning or eating hurts. I just got diagnosed with IBS-C and so of course I’m on more meds.

I’ve been trying to clean up the bathroom today because it’s been a few weeks and it needs a wipe down and man this shit fucking sucks. This is hard. I don’t make much so I don’t want to hire a cleaner.

My boyfriend offered to help and forgot so I’m doing it myself. My roommate is very sweet but keeps leaving crumbs in the kitchen and small messes in the bathroom and it’s starting to set me off. I feel like I’m cleaning up after not just myself but everyone and I’m losing my fucking mind. Sometimes we have up to 4 people in the apartment (me, bf, roommate, roommate’s gf) so the house gets dirty easily and I’m the only one trying to keep up with it most of the time. My bf helps but I feel bad because he doesn’t even live here.

So tired. I have about 3 hours of cleaning to get done today and then a lot of homework for class. I feel like I want to sleep and just not get up. Over it.

Ignored my health too long

I was diagnosed in 2014. During that time, a lot of really stressful events occurred, and it triggered a massive autoimmune response. I started plaqunil and it was so beneficial. Some years go by and I kinda stopped making sure I had checkups, and just stopped taking my meds because I felt better. Then my rheumatologist lost his license. I started having some small issues again, but ignored it. I figured my lupus was under control or maybe even misdiagnosed. A few months ago, I started having trouble opening my eyelid. I ignored it. My eyes started hurting, I figured it was allergies or strain. This week, everything came to a head. My right eye is in excruciating pain, and I can’t really see. It’s also insanely red. I was on a work trip, so I powered through. When I got home yesterday, I went to urgent care. They did a test with a black light and told me to immediately go to an eye doctor, this is an emergency situation because my cornea is cloudy. Thankfully, an office I called fit me in. It turns out I have 8 ulcers, and my cornea is swollen to 3 times larger than it should be. This is caused by the autoimmune processes going on. I’ve lost my vision. I should get my vision back but there may be permanent damage. I have a long road to go. My eye doctor is going to get me into a new rheumatologist. I feel so scared and I am so mad at myself . I’m only 36, and I have 4 small kids. I don’t know why I have put my health on the back burner. I think part of me wanted to believe I didn’t really have lupus. I also didn’t want to get close to another rheumatologist, and then find out they were actually not a great person and lose their license like my first one. I’m just venting, no one around me understands all this. They think it’s ridiculous I haven’t been having checkups or prioritizing my health. And it is. But also, it’s mentally hard for me to deal with everything.

my skin has had a crawling sensation for a few weeks now that i think might be food intolerances. i was wondering what tests people usually get, i saw options for skin and blood tests for allergies

Hello, what do you use for pain relief, I can't use my usual nsaids? I'm jus wondering any advice or tips would be helpful

As the title says, last week I saw my rheumatologist. I was actually feeling pretty good minus some lower back and neck pain unrelated to my lupus. When my bloodwork came back my dsdna was positive as well as both c3 and c4 complement being low. I’m just a little nervous as I’ve developed the malar rash since yesterday and I’m started to feel icky. The doctor wants to monitor for now, I go back in 4 months per usual. What should I expect/ prepare for. I was really really sick before I got put on benlysta infusions back in the day. That put me in remission after several months. I’ve never not had symptoms even in remission. Just wanted some feedback from the crew. Thanks guys, and hope you’re having a good weekend!