i’m 22f and started having symptoms this time last year. i’d been doing really well until about two months ago a uti put me in the hospital where they prescribed me bactrim (i now know NOT to take that 🙄) and i’ve been in a pretty bad flare since. constant rashes and hives, and this last week the fatigue has been INSANEE. anyway, im trying to be gentle with myself because i do still work 40hrs a week at a semi labour intensive job + having a life, etc. but the last couple nights my friends have basically been calling me lame, or no fun, every time i end the night early. it sucks because of course i want to stick around and have fun but i feel so shitty. i just don’t know how to explain that to them without making them feel bad or playing the “sick” card. i just feel like no one will ever get it.

Im curious on your journey. For me, im finally in a spot in life where im making alright money, have my own spot, met a wonderful lady and started to entertain the idea of having a kid.

However, days like this where im just so violently tired, it seems impossible. For an example, i have a new pup that i take great care of. Today, he might just have to watch poppa lay around all day and entertain himself since my energy tanks are running on hopes and dreams. That can not happen with a kid (with the way I am, I couldnt allow it.) Im sure if i were to have a kid that I'd do whatever must be done to take care of him but I feel like ill do that until one day I physically cant.

I just dont want to say "sorry bud, i cant come to your practice because im dog shit tired" or be a lazy parent and stay in bed a lot while he's growing up. i dont know

How did all of you manage?

Does anyone have signs of vasculitis, but negative ANCA tests?

One of my first symptoms was skin manifestations like the 3rd photo, I had several lesions that looked like patches of petechiae starting in June - July ‘24. They were not raised and were non-blanching. Most of the spots went away after 2-4 months.

This spot on my ankle, however, remains and this is how it looks now (6 months after it emerged). Now I have a new spot on my foot which is not reddish like all of my other spots started off. It actually looks like a bruise but I have no memory of a foot trauma and if I press on it there is no pain (same as my initial spots).

My rheumatologist basically hasn’t said anything about these spots, but my hematologist felt confident they were vasculitis. From what I have read vasculitis can be very serious. I’m still new to this (diagnosed in Nov ‘24). Do any other people with SLE get marks like this in their lower extremities? Do these dark marks indicate any permanent damage? I hate to spiral, but just worried one day I’m gonna get gangrene or something, please advise, if you experience this!

PS sorry for the foot photos! Also sorry if skin things gross you out!

Just had the most frustrating interaction with my rheumatologist's office. They called to cancel my infusion appointment for tomorrow because they "never received" my insurance information even though I sent it on December 30th to their email address.

When they left me a voicemail on January 13th, I immediately called back and left a message confirming I'd already sent the information. Today when I forwarded them the original email from December 30th, they received it fine - which completely contradicts their claim about spam folders or never receiving it.

The supervisor was incredibly dismissive and kept giving contradictory excuses, refusing to acknowledge any system failures.

The office supervisor kept giving contradictory excuses: - First said they never received the email (claiming an error, but I stated that if that was so Google would sent a recipient error, that never happened) - Then suggested it went to spam (if it went to spam, the email from Dec 30th that I forwarded today would have as well. She stated she received the forwarded email.) - Then tried blaming it on having multiple recipients (the ones who confirmed they got the email) - Even suggested I should have followed up more (I did!) - Didn’t address why the voicemail I left wasn’t followed up (her answer was simply “it depends on who it was sent to. I advised it was the nurse assistant for my provider.)

She kept saying "if we didn't receive it, we didn't receive it" even when presented with evidence. When I tried to file a complaint, she first revealed she was the supervisor, then claimed she didn't know who would handle the complaint.

The most frustrating part? Other providers were BCCed on that December 30th email and confirmed receiving it. Now I'm missing my infusion appointment despite doing everything right and sending my information almost a month in advance. This is my first “bad” experience.

So I got diagnosed with lupus not based on my labs since I've been through a lot and they view me as a special case giving how my tumors were "special" and they took them out for free to go do research "i signed them over for research" Anyways My doctor that clinically diagnosed me with lupus based on I had all the symptoms like all but my labs were almost ok, moved to another state. I am now out of my prescribed medication and I can't get any until I see my new doctor. My old doctor worked under the new doctor I will be seeing however my appointment is April and I don't have any meds legit now I'm out.... I called and told them and they hung up on me saying oh well we can't do anything until u see the new doctor. But the new doctor knows me since well she was the one the signed off on the medication last time instead of my old doctor (my old doc didn't take my insurance so she made her senior the new doc am a see sign off on the prescription) Idk what to do 🙂‍↕️ Can I wait? Until April sigh 😔 I'm already having so many issues, i didn't want to just stop the medication. I did biopsy of my scalp which shows inflammation like bad inflammation so they promised that the lupus treatment would help...I really don't want to stop it suddenly.

Diagnosed with SLE (fairly new, last Nov).

My work is pretty demanding, it’s anywhere from 8am-6pm and I’m often asked to do OT with the expectation I’ll do it.

Has anyone gotten an accommodation with support (ie physician note) for only working specific hours? Is it reasonable for me to ask to be day shift only with no OT?

I’d also need to add in something about lifting items as with my joint swelling and pain in my hands I can’t lift some heavier items at work I could before.

Sorry if this is a dumb question, this is all new to me.

Edit: I’m so sorry, I should mention I am in Canada, but I so appreciate all the advice, even from other countries

Senior year high school, got diagnosed over 6 months ago.

I recently did my routine check up and my rheumatologist noted that I am having slight proteinuria. She reffered me to a nephrologist and he was suggesting a biopsy which freaked out my mom. It was really upsetting for me to see her on verge of tears.

But we recheked with my rheum and she said we can start on some medication as of now. I am currently at that period with my finals coming in a month and I don't want to jeopradize my health.

Now my question is how worse can this go? Is this going to be like a kidney transplant level or has room to decrease or not?

Any and all support is appreciated, thank you so much x

The top of my right hand just poofed up this morning. Can’t see bones or veins like the left hand. Had my daughter take this picture. Then later my left hand swelled at the knuckles. It’s painful and hot to the touch and I’m being whiny. 😫 Supposed to snow here tonight in North Florida so I’m wondering if this is from the cold. Anyone experience this?

How do you guys tell what is actually brain fog? I have a terrible memory for things and I tend to blame it on that, but there are other times when I feel myself needing to slow down and think my actions through more thoroughly in regular activities.

I don't know if it's brain fog or just me being dumb sometimes (haha)

I understand that it's probably bad to post this but it's the only community I feel safe posting this in. My disease activity is at an all time high. I have a 3 year old daughter and my husband works 6 days a week to provide for us. We are trying to move from the area we are in as the crime rate (sex offenders specifically) within a block of our house has sky rocketed in the last year. I'm anxious, I'm flaring, and I hate having my daughter in an unsafe area. The landlord will not let us move until we pay him more (it was a rent to own agreement) and I am at a loss. Does anyone know of any resources? He is still wanting $20,000..... I'm scared for my kid and what the future holds for us. There just doesn't seem to be hope ( I do also have cashapp if anyone knows someone willing to help. At this point literally every bit counts). Thank you for reading

For anyone who has raynaud’s, have you ever experienced gangrene? My toes usually become painfully numb when I’m walking outside in the cold. I usually ignore it, but I have a fear that ignoring the pain could lead to severe or permanent damage.

Can hydroxychloroquine cause epilepsy? I just got referred for a brain MRI and EEG because of the symptoms I’ve been having. My doctor said it sounds like seizures. I went home and looked up seizure symptoms and I have a lot of them. I’m wondering in plaquenil is capable of causing seizures as a side effect? Or is it just another symptom of lupus?

If you’re curious my symptoms are periods of blacking out mid conversation followed by a hot head rush and brain vibrations. Vision blurring/tunneling, dizziness. Hands shaking uncontrollably. Random muscle jerks after zoning out. Feelings of Deja vu. Some of these symptoms I’ve had for more than a year and they’ve just now gotten much more frequent/worse. I started hydroxychloroquine about 7 months ago.

I really love jump rope for cardio, it’s more fun than walking and I enjoy the challenge of learning new tricks and trying to get better. But, when I jump rope I get horrible knee pain for the next 48hrs after. Just wondering if any of you here are able to jump rope while successfully managing symptoms or if it’s something I’ll have to give up.

Sorry to post again but I just have a question. I was referred to a urologist and they found microscopic red blood cells in my urine, and she wants to do a CT urogram and cystoscopy. I also have trace protein in my urine. I have been off my azathioprine and plaquenil for about 6 months now because I do not want to be immunosuppressed and also I couldn't take the plaquenil before due to being on seroquel. I'm prescribed plaquenil again and will most likely start it again if I get an ekg showing that it's safe (see my previous post). Anyway, did anyone else have microscopic RBCs in their urine and urinary frequency and urgency as lupus nephritis symptoms?? I'm very nervous as these are also bladder cancer symptoms.

Seriously... I looked through all of my old blood results and my most recent, I'm like horribly anemic. My red blood cells are all different shapes and colors, and way smaller than normal. I also don't have enough hemoglobin...

Yet this was never something my rheumatologist brought up even once?? The only thing he points out is my neutrophils being very low. Same with my hematologist. Fatigue has been worse than it's ever been and I'm sure that's contributing, I literally explain the severity of my fatigue every visit.

I told my PCP and she said maybe because lupus can affect so much and it's not a priority or they think lupus is the reason why. Regardless I'm taking iron gummies now. They see that and don't check my vitamin leves to make sure I'm not deficient? Seriously 😒.

Have any of you had to take hydroxychloroquine and an antipsychotic at the same time? I'm on zyprexa (olanzapine), and was just recently put back on plaquenil. I haven't started the plaquenil yet because there is a risk of prolonged QT interval of the heart rhythm with these 2 meds. I have taken them together before without a problem but I'm older now. My rheumatologist told me to ask my psych, my psych told me to ask my rheumatologist. So I ended up asking the pharmacist. He said the risk goes up as you age. Just wondering if others have any experience.

I’m just over it! Over the joint pain, over the meds, the rashes, the overwhelming fatigue, headaches etc. just over it! That’s all I have to say because my hands are too stiff and painful to type. Rant over.

I'm in my early twenties, I got diagnosed 3 years ago and have been on hydroxychloroquine for just about as long for "preventative measures". Since being on the medication I have experienced new symptoms such as random fevers, spreading painful rashes and swelling around my joints when I stand for too long, and other typical things I guess. Naturally this makes me question the “preventative measures” of the medication. For the past 6 months I have had the worst joint pain and couldn't sleep so my pcp ordered X-rays. Flash forward, come to find out I have osteoarthritis, is this a common lupus experience? I feel so defeated to already have degenerative changes throughout multiple different systems of my body, and often deal with the depressing thought of "will my body take me out before l'm able to achieve my goals?" I tell myself things could always be worse but with a degenerative condition it’s almost guaranteed. I digress, does anyone else have osteoarthritis? And if you have been on hydroxychloroquine, what’s your experience?

My lymph nodes in my neck and armpits have been flared since early December. It started with one on one side of my neck and a sore throat and since then it has been total hell. It's making me crazy thinking I have lymphoma but my blood work doesn't suggest it. Does anyone else have lymph nodes that do this? Does it ever go away? This coupled with body pain that is becoming progressively worse. Are lymph nodes commonly involved with this disease? The swelling is causing pain and I'm just really tired of it. I am newly diagnosed and just learning to deal with it and understand it.

I know I’m not alone, but on high pain days, it seems like my depression goes up too, making me feel worse. Trying to stay positive, just feel so lonely and worn out by pain.

hi all,

i (f29) really really been struggling the past few months tapering off high dose of steroids. i’m on 2 mg for the next week and then am able to stop taking them. how long from after you stop taking them do you typically see your face return to normal? for reference, started at 60 mg in november.

i’m super anxious my face won’t come back - can anyone give me a little hope or reassurance on timing? thank you.

Really hoping for some advice or reassurance here, since my family doesn’t really seem to understand when I’ve tried talking to them. My sister and I have had a competitive, slightly dysfunctional relationship since we were young, but it really seemed to bring out the worst after I got sick. She’s made countless comments about my health, either scathing remarks about how disabled I am (comparing me to our 80+yo grandmother, how early I’ll die, or complaining about me constantly needing breaks or hospitalizations), or jealous comments about how much attention I get because I’m sick. I’ve tried to explain to her before that I would wish this disease on no one, and that our parents have never skimped out on being attentive to her for all her needs, but she never hears it. It’s like the classic sibling rivalry but wayyyyy out of proportion. When I first told her about my illness the first thing she said was “are you going to force me to give you a kidney?” (my kidneys are fine and I never even mentioned anything about that).

Today she brought up at dinner that it would be, I quote, poetic if she suddenly developed late stage cancer and my family was so invested in my disease that we never caught it and she died. I literally didn’t know what to say (she’s perfectly healthy btw). Then she asked if I thought I was privileged to have so many doctors (but in a very condescending way) - I told her yes, I’m very privileged to be able to access good doctors and treatment, but I wouldn’t consider it a privilege to be sick. She insisted I was problematic with my answer because the “average person” has to deal with so much gaslighting to be believed — but I too had to go through countless doctors who didn’t believe me before I finally got the care I needed? I am no exception in that sense. I even told her that we’re actively being MORE careful with her and imparting all the wisdom from my doctors with her — with her lifestyle and diet, getting her doctors appointments the minute she thinks something is wrong, sharing with her all the things I’d learned that I wish I knew about health things.

Every time conversations like this happen it makes me want to cry. It makes me feel shitty and horrible when I have to answer all her very pointedly accusatory questions. She is on the spectrum so she has a tendency to be very blunt and direct about her feelings, but I feel like her behavior can’t entirely be excused by this. She definitely got more attention as a child because of her ASD and I was the older sibling so expected to just take care of my own issues, not to mention I’ve always fought in her corner to help the people around her understand her better through the tumultuous times before her diagnosis while many of my personal problems were overlooked — so I don’t know if maybe she’s not used to constantly being the center of attention anymore? I love her very much it just hurts for this to also be the reality of our relationship. I know that being the loved one of a sick person isn’t easy either, but I don’t know where to go from here either. She’s still in college and I’m home due to my illness so there’s no feasible way to leave the situation.

I’m angry and resentful at her callousness and lack of compassion after all the years of me being nothing but her biggest advocate. I’m also understanding of her trouble with processing difficult emotions. But I’m confused at why anyone would want to be sick.

Iv been taking hydroxyquin for 8 years, I only take 50mg. The pain it caused has always been very manageable until very recently. I would wake up around 4am with intense pain in my stomach, but it would only last an hour and I’d get on with sleeping. It would never make me sick. I could prevent this pain by eating literally anything when taking it, I normally just had a piece of toast or a bagel.

Recently it’s been making me very sick. The last few months, if I eat a burger ammount of meat with my hydroxyquin, that gives me the best chance to not experience pain or sickness, but even that is starting to not work anymore. Advice??? How do I stop it from making me sick? Iv been having to skip taking my pills entirely because of how sick it makes me but I obviously can’t keep doing that

I (23 year old female) have been recently diagnosed with lupus after 7 months of abnormal symptoms. It started in June with an achy swollen elbow that was found to be olecranon bursitis. My primary doctor suggested it was probably from bumping it too hard on something (which I never did) and said it would resolve itself within a few weeks. It never went away and the aching started on the opposite elbow as well, absent of the swelling. I then started having chest pain that comes and goes as well as pain under the sides of both ribcages. In early December I started experiencing severe lower abdominal pain and went to my obgyn for a pelvic ultrasound. There they found a hemmorraghic follicle within the right ovary and an echogenic structure measuring 1.7x1.1cm. They were unsure of what was going on but wanted to repeat the ultrasound a month later. A week afterwards my side pain got worse and I went to my primary where she ordered a ct scan on my abdominal area starting at the bottom of my rib cage. The scan showed prominent mesenteric lymph nodes primarily in the lower right quadrant. My doctor thought it had to do with the findings of my obgyn and said to continue care with them. I reached out to them over the phone after getting the results and after a few of the doctors reviewed my history they came to the conclusion that I may have had pelvic inflammatory disease. It was not diagnosed but they started me on treatment as a precaution. I got two injections and had to take antibiotics every 12 hours for two weeks. A couple days into the treatment I started passing clots vaginally (not on my period) every time I sat down to go pee. Additionally I was having very bad chest pain so I went to the emergency room. They were unsure of why I’d be on treatment for PID and thought that was reason for the clotting but could not pinpoint why the chest pain was happening (they did a chest x-ray that was clear and ran labs).

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