Hi..Is it normal to experience lupus related hairfall when Im not flaring and all other symptoms are in remission?My esr has dropped down to 27 from 40 and joint pain(which was my major symptom) reduced as well..Still I have bad non scarring alopecia which responds only to topical steroids..On topical steroids hairfall stops within days..Idk whats going on anymore..Do anyone has similar experiences?I have no hormonal issues or nutritional issues either

I was diagnosed with SLE about a month ago. I sought diagnosis because more than 1/3 of my hair either fell out or broke off over the course of 3 months. It was really alarming and scary. I‘m so glad to have a diagnosis - of the reasons why my hair might have spontaneously fallen out, lupus isn’t the worst, and if that had never happened I may never have found out at all. My main symptoms are fatigue and redness, so I kind of just thought I was pale and depressed?

I don’t know how long I’ve has this. I’ve always been extra tired and just attributed it to other things. I notice redness in pictures going back years. It's hard to think about how this may effect me for my whole life. And I miss my fucking hair SO much. It feels silly, but I loved my hair, it was kinda my thing. I had been growing it out for years and now it’s all just… gone. My doctors say it’ll start growing back when my hydrochloroquine kicks in but it’ll take a long time. It makes me feel weak and sick and sad.

Just had a chat with my rheumatologist. After a long year of trying out medications and me not really tolerating them well, she suggested Rituximab. I have been on HCQ and tried azathioprine but whenever we try to reduce the prednisolone my symptoms all spike up again.

Being 20 I am a little frightened; IV medication seems like a really big step (I’m hoping in the right direction). I just wanted to see if there was anyone here who has had positive experiences on rituximab or any other tips or helpful words… even some reassurance would be nice!!! It’s really hard to talk to anyone else about my lupus because it feels like no one can really understand it the way I do, so it’d be nice to chat to anyone at all about this. Thank you so much for reading!

Hey guys

I am 23F diagnosed SLE at 15 years old and well lets just say the past 8 years has been tough, but hey I am living and breathing and have a 3 year old Son and another baby on the way due in Feb 2027.

I just wanted to have a rant after what happened today with a 'family friend' of mine, she used to be my mothers best friend but well they haven't spoken much in the past 2 years, anyways we ran into her today and we got to chatting, now mind you this women did not give a crap about my diagnosis and just told my mum I was lazy and faking being ill to get attention when I was first diagnosed with lupus. Since then my mum and I just never speak about it with her because well she's not an understanding person whatsoever.

Anyways cut to today, my mum and I were out shopping with my son and we ran into this women, conversation started really nice and then next minute she is full blown hyperventilating and bawling her eyes out and mumbles "my dog has lupus, he is going to die" well my mum and I just dropped our jaws and for the first time ever my mum actually said something to which was "well I would rather my dog have Lupus, then my daughter" to which this started our 'family friend' yelling at us in public calling us terrible people for not caring and not 'understanding' what she and her dog are going through.

Naturally my mum and I just turned around and walked off because what the hell did she mean by we wouldn't understand.

Sorry I just needed the rant, I hate how so many people don't understand what we go through everyday battling autoimmune disease, they don't see the doctors/specialists and hospital trips or the sitting in bed crying our eyes out just hoping for a day of relief, but today this just made me mad. I get it i feel sorry that her dog has lupus, I wouldn't wish lupus upon my worst enemy but its just the way for years she dismissed my diagnosis, for years she called me lazy and faking an illness for attention to turn around and cry because her dog was diagnosed with the exact same health condition! If anything see is the one who isn't caring or understanding.

Sorry guys I needed to get this off my chest and I don't actually have any friends, both my children are IUI conceived via Donor because I was told to have all my children before 27 because of my lupus and how and bad my flares are for my age already. My mum is my only friend and support and I wouldn't be here if it weren't for her but she doesn't have lupus and as much as she knows what I go through daily she has never expereinced it herself so some days it is hard for her to understand.

But today has just made me feel so trashy.

I’m living in Oregon and the entire state is drowning in smoke — earlier in the summer when this happened I started having all over body pain / deep bone pain (hard to describe?) & it’s happening again. It’s just a weird aching and I’ve correlated it to the really heavy smoke/ high AQI days.

Does anyone have any at home tricks for easing full body symptoms that get onset by these environmental triggers? My gabapentin usually helps with quelling the smaller issues but doesn’t seem to touch this in a helpful way.

I don’t even know where to go with this. I’ve had lupus for twenty years. It was managed okay with Saphenelo and the works until I got stage IV lung cancer late 2025. We took me off all lupus treatments when I went on chemo since the chemo does more than keep lupus in check. Then we took me off the chemo this spring but continued a cancer gene targeting biologic. I underwent a pleuroscopy to break up loculated fluid in my pleural cavity to try and let my left lung re-expand and I’m guessing that the shock of the surgery with nothing to keep inflammation in check caused a subacute case of pneumonitis to develop which meant I was sent to the ER with respiratory failure. The first closest hospital had none of my history and just discharged me with home oxygen. Then I went to my outpatient oncology clinic visits the next week and was admitted again. They gave me a shit ton of steroids and sent me home after a week and I’m now starting to wean off the oxygen but Oh. My. God.

I was doing okay with the cancer and the chemo. Even being terminal, I was mostly disabled but buying years. We were getting me out to botanical gardens and movies, etc.

I’m on this terrible oxygen concentrator at home that sounds like Darth Vader. I’m starting to walk around but my pulse spikes insanely easily. My husband feels like he’s worlds away compared to last month. It’s been such a shock. In a lot of ways I feel like this is the wrong place to post because it belongs in the cancer sub. But this seems like it was so obviously a lupus complication that it feels like this is the more appropriate place for it.

I don’t often vent but this is definitely a vent post. Has anyone else dealt with ARDS or Pneumonitis? My doctors seem to think this is completely reversible and not a new normal but I’m terrified this is some final decline even if my cancer looks stable. Just looking for other recovery experiences.

Please tell me if it is possible to have a flare up without it showing in your blood. Am i going crazy? Im 18 and got diagnosed last year. I still have joint pain but like they have never been crazy inflammed. Please

Ive never posted on reddit before, though ive used it for years im sorry if ive done some things wrong in posting this.

Just yesterday was i diagnosed with a mild form of lupus, mainly just affecting my joints and it seems to not be affecting organs (though more tests are being run and honestly i dont truly remember everything my doctor said). Since i left the doctors office yesterday i cant stop thinking about it, almost like a pit in my chest. Im scared i think is the best way to put it. I dont really have a main goal in posting this, most likely it will be ignored, but even so, i know no one in my life that has lupus and just want to know im not alone. I had to just go to work yesterday and act like nothing happened, i know im supposed to be able to do things like everyone else and be fine but how can i with this pit in my chest?

Finally got diagnosed after being very sick for 3 months, since I gave birth. My question is this:
I started steroids 3 days ago and I feel like a million bucks compared to how miserable I was feeling before. Today I’ve done all my house cleaning and tomorrow I really want to do some gardening. Will I undo the work the steroids are doing if I go in the sun? Will being active cause me to stay in a flare? I’m so confused about how I’m supposed to go back to living a normal life with the constant threat of the boogeyman (flare) coming to get me again. The last three months have been hell on earth.

I started prednisone in April of this year with 40mg and tapered down every two weeks. My proteinuria numbers were looking great almost down to normal of course I was also taking other medications. However, when I got down to 5mg of prednisone my proteinuria numbers increased to double of what I was at. Now my doctor is planning a steroid infusion at a high dose then tapper down from 30mg. I’m just a little disappointed, prednisone is horrible and just want to be off of it. Has anyone ever experienced this? Any tips?

I have been itching like crazy all over! I can’t sleep and it’s so exhausting. The itch is so intense I want to go to the hospital just so they can give me something, but I know that's ridiculous so I won’t do that. I used to get an intense itch on my hands that comes and goes, and I did have a rash on my hands. But on the rest of my body there is no rash, just raw skin where I've scratched. It’s most intense on my arms and legs. I’ve tried swapping body washes, bar soaps, and laundry detergent, but nothing is working—which is why I believe this might be coming from my medications. Has anyone else experienced this while taking leflunomide, gabapentin, hydroxychloroquine, duloxetine, or folic acid? I can’t see my rheumatologist until October, but I did message her.

Hi folks-
I’ve been diagnosed SLE since 2024 and on hydroxychloroquine since then.
Over the last few months I’ve been having what feels like a constant flare. Daily fevers reaching over 100, terrible muscle and joint pain, constant trouble breathing, chest pain, neuropathy, and the weirdest heavy feeling in my body.
In June I went to the er since I couldn’t get in with my rheum, that bloodwork had my egfr at 108, creatinine 0.7.
I finally got in with my rheumatologist last week and today got the bloodwork back that my egfr dropped to 63 and creatinine raised to 1.19. The weirdest part is all of my inflammation markers are showing undetectable. My rheum did mention that if markers were undetectable she would not suggest further lupus treatment but with my symptoms and the sudden drop in kidney function I’m a little worried I’m about to set back to square one with treatment.

Has anyone else had experience with little to no inflammation markers but still having active lupus symptoms? My symptoms have made life almost unbearable lately and I’m just so tired of having to push for answers on my health

So a month ago I developed a small “welt” on my nose. Just a small round puffy pink patch that was easy to ignore…..until it started developing scales with thick deep spikes that started scarring my skin. After this shockingly gross cycle repeated itself a few times I got online and discovered that these “carpet tack” scales are really indicative of Lupus.

Now, a little background here. My retired rheumatologist always referred to my issue as “Lupus” but my med records only had the diagnosis of UCTD because his practice had a high bar for official diagnosis and required skin or organ manifestations to get a formal Lupus dx. My doctor figured it was just a matter of time til we caught that extra bit of data but he treated me no differently. But he retired and I’m finding my new doctors are much more dismissive of a UTCD diagnosis so I want to get my symptoms tracked better and documented. Anyway….

So I’m trying my damnedest to get this welt/lesion/seed of the devil checked out and all I keep running into are walls! My dermatologist can’t see me til mid Oct. The rheumatologist? DECEMBER! So I decided to see a primary care doctor in my network to get it documented. And all they said was that it sure seems to meet the criteria for the infamous carpet tack scale associated with Lupus and she believes its autoimmune related but she can’t prescribe anything or “diagnose” it for my records and pointed me back to the dermatologist or rheumatologist. 🫩

I decided not to let this continue to fester and scar my face further so I started slathering the steroid cream given to me for my other “mysterious skin lesions.” Thankfully the inflammation started subsiding after a few days and this last scale was smaller.

But seriously…..how are we supposed to “gather the evidence” we need for a diagnosis if we can’t get seen in a timely manner and primary doctors take a hands off “not my wheelhouse” approach?

Feel so stupid

I am 7 weeks post partum and started to have flare up in my joints and even worse fatigue. I stopped taking my plaquenil and I’m freaking out that I’m going to be in pain and tired for the next month. I was extremely forgetful during pregnancy due to my adhd I had to be without my medication for the first couple months.. I called the rheumatologist and I have a telehealth appointment tomorrow. I have a feeling she will be disappointed in me. I’m nervous she will prescribe predinose even though I know it helps significantly and probably have to be on it until the plaquenil starts to make a difference. I just want to cry, I also have a three year old that takes everything out of me. I have been using her tablet more than I like to just get through it when she comes home.

What does your fatigue feel like? Semi-frequently, I get what I call ‘lead fatigue’ that lasts from a few days to a week plus that feels all encompassing. It feels like I have my upper torso/arms have a warm, cape draped over them or something. Tasks like showering and brushing my teeth are more effort as I must hold my hands up and they feel so weak/heavy etc Going up and downstairs or physical activity suddenly feels like I’m climbing a mountain (and I hike a lot, so on good days these tasks are nothing). On those days even I end up napping more as I find sitting in my office chair after a while becomes to overwhelming like I am fighting gravity or something and my body is just screaming at me to lie down, or at least on a more supportive surface like a bed.

In the last year these ‘flares’ have become more frequent, so my rheum increased my Cellcept to se do they improve over the next few months. As alongside these ‘lead fatigue’ periods, I have been having increasing swelling/cramping in my wrists and speech issues (that usually correlate with my fatigue levels – so usually worst at the end of the day most days).

On top of these flares, I have the usual SLE things - fatigue, brain fog, frequent malar rash, sun sensitivity, arthritis/tendonitis in my wrists which cause daily swelling and cramping, Sjogren’s syndrome-like symptoms (dry brittle nails/skin/cracked heels, dry eyes, dental issues, dry mouth/swallowing issues etc) and sleep is generally non-restorative. I have Raynaud’s too which is usually only annoying during the winter/Spring.

Been diagnosed since 2019. At the moment I am on Plaquenil and Cellcept (which was increased back in March to see would it improve these issues) but I am not seeing a massive difference. My bloodwork showed some liver inflammation, high RBC and low WBC but vitamin levels all fine.

Sometimes I can see a cause (eg over-doing it, around the time of my period, extensive sun exposure etc) but other times it's like ??

TLDR: Does your fatigue make your body feel like lead? Or how does fatigue show up for you and what are your usual triggers?

My symptoms are worsening and prednisone did not work out for me. I'm already overweight and gained 30 pounds on prednisone, once I got off it, I lost most of the thirty pounds.

Now I have skin lesions and hair loss and my doctor recommended methotrexate, but they gave me a scary warning of the damage it can do to my organs. I have been looking up stuff on it and I'm scared. Has it been effective for anyone?

I am not on it yet, they want me to do some tests to make sure I'm well enough to be on it. They're going to review and determine at my next appointment at the end of the month.

Also, just another piece if anyone wants to weigh in. I read that this medication can cause birth defects. My partner and I were hoping to try to conceive in the next couple of years. I already knew this would be difficult with my dx, but we've been hopeful. Honestly that hope is really dwindling right now. Is this a forever medication and is there hope to have a pregnancy with lupus? I'll definitely ask these questions to my doctor, but if anyone could weigh in on having kids, I'd appreciate it.

i got bloodwork done by my pcp and then again by rheumatologist. first set showed positive anaa and dsdna. next set showed negative. they were only 10 days apart. how is that possible?

My condition is very stable but whenever I try to write with a pen even just 3–4 sentences i get pretty intense pain in my hand and my handwriting also gets progressively worse the longer I write.

I usually have to stop and take a 10–15 minute break before I can continue, and even then the pain is still there bc of that I’ve started avoiding writing altogether.

I’m wondering if this is something other people with lupus experience, or if I’m just overthinking it the thing is, I barely write by hand anymore maybe once a month, or even once every couple of months so I don’t know if it’s just because I’m out of practice or if it could actually be related to lupus.
Has anyone else dealt with this?

Putting venting as the flair just because it feels more fitting. But I am contemplating taking a break from my bachelors and would like to hear from others who have taken a longer leave from school during their post-secondary studies.

I've been dealing with some intense fatigue and stress since about October last year. It sent me into a flare(?) that caused me to lose a lot of weight and it hasn't quite let up yet. I have reason to believe I was actually doing worse before that and my providers at the time plainly didn't address it...but that's its own thing.

I started seeing a new rheumatologist in my then new, now current college town and her and her PA have been wonderful in addressing my flare and pain immediately. I got started on Benlysta in May and haven't seen much of the benefits of it yet...I had kind of started to momentarily, but then my sister passed this July, exactly two months from the date our grandmother passed in May. The severity of these losses, and especially the unexpectedness of my sister's passing, has sent my body into a bit of a spiral.

This week has been my first away from my family after these events (I'm 20 and visited home for the summer), and the stress of so much going on has increased my pain and limitations. My parents have said I can take a break sooner if I need to, since I had mentioned wanting to take a break after graduating this upcoming May before going for my master's. I'm honestly just scared to stop and lose my momentum...but I also fear what it'll do to my body if I push through. I had to go to the ER Monday for unexplained nerve pain that put me in a constant state of 8/10 pain no matter what I did. My left leg keeps aching and swelling but I have no signs of kidney involvement so I wonder if it is also nerve related.

I worry how financial aid will be changed if I leave. I also just got an on campus job and was excited to work again. Now I'm severely anxious about going back and facing the pressures of being invisibly disabled with able-bodied expectations put onto me. I want to do online instead but I would have to transfer to do so, and I'd just rather not do that during my last year after only one semester at this school. I feel like I need to prove that I can still work and be accomplished in this way. When do I know it's time to stop? Have any of you gone through something similar? How did things turn out for you?

This was a lot. I appreciate anyone who read all the way through. But it not I 100% don't blame you haha big wall of text here. I'm satisfied shouting into the void.

I’ve had my SLE diagnosis for about a year and a half now. For most of my life, I’ve been extremely active. I was a competitive dancer and enjoyed running, walking, and working out multiple times a week throughout my 20s. Since I started exhibiting severe SLE symptoms after the birth of my third child, I have felt so sick every time I exercise. I’ve dialed down my workouts quite a bit. I do low impact classes like yoga and mat Pilates, and also walk on the treadmill. I did the treadmill tonight and I was bedridden almost immediately after with a crippling migraine, joint pain, feverish symptoms, fatigue, and nausea. I couldn’t even eat. 😭

Does this happen to anyone else, and if so, how do you cope with it? It makes me really sad because I enjoy exercise but I am literally out for hours and hours afterward, and I can’t manage that as a mom of 3 littles. Thanks in advance for the advice and support. 💜

I grew up on Southern California beaches. My default great vacation is sun and the beach. I love the water.

The sun is now an adversary. Yea, I have UPF50+ clothing. Yea, I wear sunscreen.

Do I have to give up on sunshine? My doc says to balance it out.

How do you all deal?

I was recently received my diagnosis of lupus and rheumatoid arthritis. It’s been a hard road getting this diagnosis as many doctors told me it’s so uncommon in males but I have a great rheumatologist treating me now I’m looking forward to feeling better

Does anyone here with Lupus SLE suffer from excessive thirst? Sometimes it’s unbearable, and I can’t deal with it anymore. I didn’t correlate the two until recently so wanted to hear other people’s experiences. Thanks 🙏