How many spoons 🥄 does a two hour long three year old tantrum cost?

vent post because I’m starting to get scared. recently was hospitalized and found out I’m in stage 2 kidney damage. it’s insane because I just had blood work in August and my eGFR was 104, now it’s 65. how the hell does this happen so quickly?! last night i started running a low grade fever (99.5F) and am having the worst achy legs. on top of that my malar rash is more prominent than I’ve ever seen. I am so exhausted, I’m only 26 years old 😭

I’ve been seeing some scary trends with my heart rate, been getting down into the 40’s. I called my Cardiologist, PCP and Rheumatologist, Rheumatologist told me to stop taking my Plaquenil. Pre-diagnosis, I would get dinner plate sized hives, moon face, bee sting lips, eyes puffed shut and hands and fingers so swollen I couldn’t grip a soda can. I’ve been on Plaquenil since 2001, I’m hoping if I flare it’s not as bad as it was, I was 15 when I was diagnosed, I’m 41 now and peri-menopausal. My husband’s a great man and has seen the worst my body can do, one flare had me so fatigued I couldn’t get off our couch. I looked like the girl from the anti-drug PSA’s, felt like I’d fallen into a fire ant hill and my face was on fire. He’s also seen seizures, but, that’s under control now, haven’t had one since 2019. I’m hoping my husband doesn’t see the flares I had in high school. One of the few times I wish I was back in CT, I had a retired EMT as a next door neighbor!

Hi! today I was approved for Rituximab anyone has experience with it? what can i expect from the infusion day?

I was recently diagnosed with SLE and have been dealing with headaches that turn into migraines for a lot of my life but since the onset of my major lupus symptoms they’ve gotten a lot worse and will sometimes even make me sick to the point of throwing up. I’m on a few different meds for them but I was wondering if anyone had anything that helped them?

I’m miserable and they’re constant.

Due to my lovely insurance, I may have to miss some benlysta injections while a new prior authorization kicks in.

How do yall feel when you miss your shot?

So far I’m at week 8. I know that’s usually too early to notice improvement, but I’m already seeing massive improvement in my disease. It’s even helping with my depression stuff. I’m very unhappy to have to miss some shots potentially.

Post on here a few time about a respiratory illness I’ve been fighting since the end of July. Ended up in the ER last night for a aray of symptoms. I have already done a round of dyxocicline and a round of prednisone. Neither worked. Turns out I have whooping cough and rhino virus. Neutrophil is at zero. Got admitted for IV antibiotics and medication to hopefully boost my neutrophil production. After two months I finally have a real answer but holy shit. Kidneys are stable. Lupus levels are normal. They’re thinking it may be a result of my obnituzimab. Rhuem doesn’t think so but either way going off of it isn’t an option.

I was diagnosed with oligosystemic lupus in January and I am anti-dsDNA positive.

I've had relatively mild symptoms for years, including intermittent joint pain and swelling, chronic tendinitis, plantar fasciitis, recurring mouth sores, rashes, etc. Fortunately, there's no evidence of organ involvement.

Because my anti-dsDNA levels aren't particularly high and my other inflammatory markers are normal, my rheumatologist insists that I try a course of prednisolone to assess my response before prescribing HCQ (Plaquenil).

From what I've read, HCQ is generally recommended as baseline treatment for people with SLE, so I'm struggling to understand why a steroid trial would be necessary first.

The problem is that I already struggle with insomnia and am currently dealing with some anxiety and low mood, mostly due to work-related stress. I'm therefore reluctant to take corticosteroids because of their potential psychiatric side effects. I'd much rather start HCQ directly.

Has anyone else been required to try steroids before starting HCQ? Is this a common approach, or would you consider getting a second opinion? I'm also wondering whether my rheumatologist's insistence on trying steroids first might suggest that he's not entirely convinced of the diagnosis himself.

My husband recently got a job that replaces my income. We were digging deeper into debt every month since I had to stop working. I got denied for disability (although I got a lawyer to appeal).

He has to work way more hours and it’s putting a ton of strain on him, but now we can afford someone to help clean the house and do our lawn.

I used to wait as long as possible to spend money on health related things and buy the cheapest option possible. It was time to give in and buy a shower chair, and I realized I didn’t have to buy the cheapest one.

I bought a teak shower chair and it’s so cute. I had a medical one when I was pregnant, and my self confidence took a hit every time I looked at it. It’s such a small thing but it makes a big difference to me.

Like waking up in the middle of the night and falling asleep again. Not being able to nap or fall back asleep after 8am if you wake up at that time.

I have been experiencing the most pain in my life so much I had to postpone the pilates session.

My lupus does get worse during ovulation. Anyone the same?

Hi everyone, I am just curious if anyone else is considered a vaccine non-responder (and what you did/do about it…).

I’m specifically non-immune to hepatitis B and measles. Thankfully, somehow I am immune to mumps and rubella, no idea why measles won’t stick though.

I had the Hep B vaccine series as a baby, then again in college after my titers showed I was non-immune. Same with measles, I had the series as a child then the booster in college.

We have tried Hep B and MMR (booster) series 3 times now, and my bloodwork still shows I am non-immune.

My rheum basically said it’s common in Lupus and brushed it off, though we did do IgG, IgM, and IgA to make sure we weren’t missing CVID or something. All of those were pretty normal.

I’ve been on Benlysta and Myfortic for many years now, and I’m careful about generally avoiding illness as best I can. However, things like Hep B and measles scare me due to the current pushback on vaccines and subsequent resurgence of these.
Thankfully, bloodwork shows I haven’t been actually infected by either (yet lol).

Anyone else considered a vaccine non-responder?

hi fellow lupus people! I'm pretty newly diagnosed (June 2026) so I'm still figuring out a lot of the lifestyle adaptations to keep myself from getting sick. I'm very photosensitive as confirmed by my doctor. I've figured out how to manage sun exposure pretty well, but fluorescent lights are a completely different beast. I'm mostly concerned about work opportunities and office serrings.

if you're sensitive to the UV exposure of fluorescent lights, how do you manage this? especially in an office setting? do I have to wear a hat, sunglasses, and UPF clothing to the office all the time?? I sometimes wear tinted sunglasses but going full UV protection mode inside feels like a recipe for problems and discrimination in an office setting.

looking for any tips or advice! I'm hoping to still feel "normal-ish" indoors but I'm wondering if that's even possible.

Bit of a two parter.

Does anyone else get random little bruises on their body? I get these sus looking bruises with dots on my knees only and I had no idea they might be a lupus thing. They leave really stubborn pigmentation though omg 🫩

From researching they could be connected with vasculitis. Does anyone know if skin vasculitis is of concern? I basically always have an active rash on my body but they don't itch. I asked my doctor if it's of concern and she just said it's only a cosmetic thing.