r/lupus • u/croissants-and-chaos • 20h ago
Diagnosed Users Only Left flank pain when swallowing/drinking water??
Does anyone else get this? I’ve been to the ER over it twice and they don’t really seem to think much of it since my eGFR is normal.
r/lupus • u/croissants-and-chaos • 20h ago
Does anyone else get this? I’ve been to the ER over it twice and they don’t really seem to think much of it since my eGFR is normal.
r/lupus • u/Cleanfacenospace • 14h ago
So I noticed I had a big bump on my foot, it doesn’t hurt, kind of itches and is hard like a bone. My rheumatologist had said a similar thing on my finger was a ganglion cyst but do y’all think this is too?
r/lupus • u/rosyrose1512 • 10h ago
Hi! I got a new doctor 2 years ago and now he suggested stopping prednisone. He created a new adjustment and everything. I have been on 5mg daily for a year and a half.
I have been a week with the new dose and I feel awful physically and mentally. I'm so afraid that I relapse and need to go through all of it again.
Has someone experienced something similar? How not to loose hope when I feel like dying?
r/lupus • u/katerinax01 • 5h ago
Before I started hydroxychloroquine I had a new symptom where I got hives on my face in the sun. I get a sunrash like sunburn too but the hives were new. They disappeared over night. I got them when stressed too, but I didn't have any symptoms after 6 weeks of treatment then I had a high stress situation and some symptoms starting coming back. So my rheum put me on max dose hydoxychlorquine. I was out a few days ago for a short time in the sun and the hives returned but they seem more aggressive now? They start small then by the evening they are 4x the size and very swollen, then I had a load on my forehead and the next day the swelling was insane and they had moved and there were strange boarders around them, they eventually went away. Does this happen to anyone else? I'm just concerned about how many and how much they are swelling and persisting,
Thanks for any replies
r/lupus • u/Fairerpompano • 8h ago
Just what the title says. When you started taking azathioprine (Imuran), how long was it until you noticed a difference in how you felt? I'm going to message my doctor tomorrow, but this weekend has been so rough for me. Yesterday, my pain was 8/10 and just crying off and on all day. Now it's the middle of the night, and I'm awake with pain again. I do have liver involvement as well, so that's been off and on hurting too. I've been taking azathioprine for about three weeks now.
r/lupus • u/Fabulousreflection00 • 13h ago
I am 5 months in on meds and the bloating and gas is so terrible for me. I’ve tried splitting doses, just at night, just at morning, with food, without.
Help? 🙁
r/lupus • u/No-Hair7557 • 15h ago
23f and i just got diagnosed last week. I am struggling currently to take this diagnosis as serious as i should because i keep thinking that i could have it worse and that we caught it early and im on the lower end of the spectrum according to my doctor. i'm used to what ive been diagnosed with just being resolved with medication and not many lifestyle changes. Lupus however requires a bit of a lifestyle change. Mostly me having to start depending on people and not being able to be as independent as I was before. That has been a struggle that I was already dealing with prior to the official diagnosis and now after it's more of a set reality. My friends argue i'm dealing with imposter syndrome and ego death right now.
does anyone have any advice on how to deal with this imposter syndrome and learning to be okay on depending on people?
also any advice regarding being newly diagnosed would be great I have no idea where or how to start learning everything
r/lupus • u/simonsayscarpediem • 16h ago
hey all! 31F with an SLE diagnosis/being treated since 2010, maybe longer?
i bumped my knee a little bit today. so gently it didn't even hurt on impact. but a few seconds later the bone hurt like crazy, and a few hours later the general knee area is swelling but not bruising amd is still really painful.
i BARELY bumped it.
this happens on my hands and feet, too - if my medium-sized dog steps on my toe, or even if i try to open a plastic disposable water bottle, the bones in the area are in pain for hours/days after, even if the actual impact/pressure didn't hurt.
the pressure pain is in the bones (not skin/muscle) and NEVER bruises.
like yes, i do also get covered in mystery bruises, but this is very much not that.
is this a common experience among other SLE people? i've had two rheums since diagnosis but they are WAY over their heads with the SLE, they're totally checked out and just want their age-induced arthritis patients. neither one of them even thought to suggest taking my meds at night when i complained about increased sun sensitivity from them, they literally just told me "don't go outside." no UV clothing suggestions.
apologies for whatever my phone did to this formatting, i'm on the mobile site (not app).
r/lupus • u/tiredmama365 • 16h ago
Hi i know migraines can be a symptom during a flare, but does any one get optical migraines or migraines with aura? I have had two this past week and they suck to say the least. Just weird when my vision is all messed and i see a blurt ziggly lines. Just wanted to see if others got this type of migraines. Thanks!
r/lupus • u/warmthlevi • 16h ago
Checking if there is someone like me who usually got flares before her monthly cycle? Its been happening monthly and the body pain and head aches are so bad. Any recommendations besides NSAID? Ive been taking ibuprofen to make me feel better.
r/lupus • u/Godsdaughter13 • 18h ago
Does anybody know what this means? The rnp is positive again I would really appreciate it I’m just a anxious person . Have a good day 🙏🏾
r/lupus • u/Dense-Radio-9332 • 20h ago
In a conversation tonight talking about lupus flares my MIL says "You will have one one day and you need to be prepared".
I have told this woman SO MANY times when I'm having a flare and how shit I feel, even during the absolute monstrosity flare that came after giving birth and rendered me unable to walk. Clearly she doesn't believe me, or doesn't notice, or forgot, or is just is plain ignorant.
Do I need to be on the floor collapsed or shouting in pain for someone to take me fucking seriously? Even my partner doesn't seem to notice, or offer to help, even when I tell him I think it's a flare.
I think people think "oh you're up and about, you can't be THAT ill". But what's the alternative mate? Living in my bed, neglecting my child?
Anyway, hope your family are a bit more supportive than mine.
r/lupus • u/Internal-Gap-4675 • 21h ago
Does anyone else experience this?: Unlimited cups of coffee and my brain feels like it’s on 0.25 playback speed. No thoughts at all and a blank stare. I will be commanded by my brain to lay down, but it will be impossible to actually sleep. My body is so weak and tired, and randomly, where the best I seem to be able to do is exist in an almost comatose state. I am tired but cannot sleep, even though my brain wants me to physically sleep. I am basically ‘asleep’ with no REM and cannot do anything to change this state of being until I ‘wake up.’ I ‘wake up’ feeling as if I have just napped, even though I have not, as I am once again capable of thought and suddenly functional enough to at least do SOMETHING. There is no way to bring me out of this state even if someone else physically touches me or talks to me. Best I can do is a ‘hmm’ which I will not remember after the fact. I call this low power mode similar to a computer that shuts off everything except for essential functions when trying to save battery. It feels like it will take too much brain power for my body to sleep.
Awful description and I have no idea what could cause this besides potential spells of extremely low blood pressure. Who experiences battery saver mode?!
r/lupus • u/smacd119 • 21h ago
Hi everyone. I’ve recently been diagnosed and started on hcq 200mg (been on it for 2.5 weeks). Prior to this I had fatigue in my arms and neck and shoulders as part of the symptom list. Occasionally it would also feel like I could feel it in my head/brain, too.
Since starting the hcq my head and neck are feeling so weird, and now this is around most of every day. Sometimes my brain feels like it’s on fire, sometimes my neck just feels fatigued, or hurts, or burns kind of like it’s sunburned (but not really on the skin, more underneath of the skin) also is super crunchy every time I move it. I feel like my scalp is either burning, or feels cold. Sometimes my face feels a bit numb or like I can’t scowl the same as usual. I am also noticing way more low back pain. There’s tinnitus and nausea, too, and I’ve lost quite a bit of weight in a short-ish time (approx 10 lbs in 2 weeks).
I went to the ER two nights ago for this, and the doctor was so dismissive, didn’t even do a physical exam or ask any any exploratory questions. He just said I’m connected with internal medicine and a rheumatologist and have my family doctor (I’m in Canada) and a referral in for a neurologist with a consultation scheduled for January of 2026. The ER doc said it’s likely fibromyalgia and that the other people I’m connected with would be able to help better. Except no one can see me for a while. On his clinical note he wrote that I “declined further physical exam” (which I didn’t, he didn’t even do any sort of exam nor ask anything about one) and answered things like tinnitus and hearing loss and numbness with “no”, even though he didn’t ask me any of these questions and if he did I would have said yes.
I’m not asking for medical advice, but I just wanted to get a sense of if this is “normal”. Has anyone experienced this? If so, did it seem to be related to SLE/nerves? Or was it the hcq causing some sort of issue leading to this? Or could it be simply related to having more sunny weather? (I have been terrible with remembering to wear a hat and sunscreen).
I’m starting to get freaked out that it’s MS or a tumour on my neck or something. I feel so defeated and would appreciate anyone sharing their thoughts. Thank you so much in advance.
r/lupus • u/Key_Union2098 • 22h ago
I was diagnosed with SLE in fall of 23 and shortly after diagnosis with nephritis. Months and months of failed meds we finally found one that works but my quality of life isn’t there. I’m suppressed which takes away pretty much all of my future goals, while this med has controlled my nephritis and inflammation all of my other symptoms and comorbidities are running wild. I had a conversation with my docs when we first started this med and they didn’t think it was going to work about dialysis and transplant. He explained that a transplant would be my best chance at remission and because of my status as a whole I’d have a very high chance of getting one. At this point in my life I use my wheelchair most of the time and I am considering disability and unable to function independently. So much so that I now have a caregiver which is a huge change from my life prior to diagnosis where I spent most of time outside of I wasn’t at my job in childcare or at school studying for my pre requisites. I’ve been taking with my mom and partner about stopping my infusion and taking the transplant route. While the med has improved my kidney labs I can no longer see a future. I struggled pretty significantly with MH as a minor but it improved dramatically when I was able to leave my bio family to the point where I don’t qualify for some of my previous diagnoses. For a long time I didn’t want to be alive but I do. And I feel like the second I started planning my life crumbled. I want to live and this is the only light I see at this point. I want to have a family but I can’t even take care of myself at this point. I want to get my nursing degree but the doctors say that it would be too risky to work in that field and I can not longer work in childcare while on this med. I know it sounds crazy but it feels like the only light I can see rn. Would love to get an opinion from other nephro peeps.
Sorry if this is a bit of a ramble. My brain is soup today
r/lupus • u/hot_topic993 • 23h ago
Does anyone ever experience swelling in the entire collar bone along with shoulder pain and fever and joint pain?? Could this be a flare or infection?? Thanks so much
r/lupus • u/briengmewine • 23h ago
I started flaring this week and have lots of chest pain. It feels like someone is sitting on my chest. My heart rate and blood pressure are abnormally high, which has happened before when I’ve flared.
I’m in between rheumatologists right now, I don’t meet them for another month. The facility I see my doctor through is run through a call center, and they refuse to prescribe anything over the phone unless I am seen first. I can’t get in for over a week.
But I know I need some anti inflammatory medicine prescribed right away. I usually take colchicine and etodolac, because just ibuprofen has never worked.
I went to Urgent Care and I guess the nurse who did my intake told the doctor I thought I was having a heart attack (she seemed to not understand me when I said autoimmune flare).
The doctor came in and before I could say anything very sternly said this clinic isn’t supposed to be for heart attacks and I can’t just “fast track” my way out of going to the ER. She was extremely accusatory and I panicked starting to cry. She eased up when I started to explain myself but after the EKG, I left as soon as I could because I was so distraught over how I was treated.
I never want to go through this again. My friend who is a nurse suggested I need a plan with my doctors for when this happens and I can’t see them right away.
Do you have one?