I'm 43 and was diagnosed about 10 years ago. This year I've been getting hit HARD at least once a month. Extreme bone and joint pain, Extreme fatigue, overall malaise, almost delirious thinking. I've always gotten through my periods without the feeling of death but they hit harder this year. I really feel like perimenopause is hitting and it's the perfect storm with my lupus. To the point that I almost just want to get a hysterectomy to alleviate the hell. I mean I missing work and not showering for days because I just can't physically make it through the process. I never miss work...

I guess I am just looking to talk about it and I maybe others can weigh in on their experience or knowledge. If anything, thank you for the community. Sometimes I feel like i'm on an island and I wish I could convey to healthy people what it's like. I feel like an inconsistent flake. I hate it.

I’m mad at my body again today. It woke me up at 4 am to tell me I’m in pain again as if I didn’t already know that before I went to sleep. And now I cannot go back to sleep because I’m nauseous from being awake too early and if I lay here too long I’ll get a headache that will turn into a migraine.

I hate this and I know this is just the beginning of my journey with lupus but holy shit am I over it.

Does anybody else have bad lupus flare and regular lupus labs are normal. I am feeling like death. Severe fatigue, headaches, joint and muscle pain, nauseous, etc. Sleeping a lot. But my lupus labs aren't showing as off right now.

Hey everyone, I basically have alot of self hatred and i have a habit of trying to force myself to get back into lifting/working out. Id love to be patient and wait but my flare ups last too long and i dont wanna just sit around either. I try to do some push ups or lift a few weights, nothing crazy but for some reason it makes me nauseous and sick, get a fever, pains seem to be worse. Why is that? Anyone else deal with that? I can endure physical pain. I don’t mind it but getting extremely sick post workout its brutal. Any tips would be appreciated too.

Hello all! This may be a weird question, but I’m wanting to get Botox, and my provider said it can have negative interactions with lupus. Has anyone experienced this? If so, what are some alternatives? Additionally, did anyone not have any negative interactions with Botox?

I am enduring a new flare It is affecting my arm now. Its usually my legs and hi, sometimes my thoracic cavity (can’t expand the chest to breathe) but this time its my elbow and wrist OMG its so painful Ive taken everything I have and my dr prescribed a Prednisone pack tm get me over the hump but its not working It hurts to hold my phone and type. I am hating this so much Any advice? I’m allergic to NSaids

I am going through a flare at the moment and it's kicking my ass. The other day i made a decision to cut my hair, cause the thinning at this point is just embarrassing. Of course i asked around at work and was given afew recommendations cause i wanted a barbershop with a salon or a salon with a barbershop. Left work and went out searching in the hot afternoon sun. Walked around for a couple of hours and still didn't get what i wanted.

I went home, took a nap and woke up 2 hours later feeling as though I've been hauling rocks the whole day. I ignorantly effed around and man, am i finding out. This is the worst flare I've had in a while, and I am supposed to be covering the weekend. I don't want to seem flaky at work, but yet I could barely finish today's wardround.

Sigh... I just needed to vent abit i guess, and i can't with my family cause they don't even know how bad the flare is and they'd start travelling a whole 6h just to take care of me and hovering. Sigh again.

Anyone here with "mild APS" been told they have to go through peri without any help from hormones?

My doctor diagnosed me because of several early miscarriages in a row and labs that otherwise would have been dismissed without the clinical history. I have other labs positive for lupus and sjorgren's that are conclusive but also... mild 🫩 (my symptoms are not to me but thats not relevant atm) and labs well controlled with Plaquenil.

Im obviously at that age and all my friends are getting their peri problems addressed and its frustrating. But also no one understands menopause well so I dont trust my regular physicians to be well versed on new information for that. And I am one to trust my doctor's usually but also im in the medical field so I call out their bull if I see it too. Trying to determine if I go to a women's doctor and they suggest hormones whether to trust that because autoimmune is also poorly understood outside its specialties.

Hey, so I was just diagnosed with lupus 2 weeks ago. The rheumatologist said I'm a "textbook case of lupus" and then told me to read up on it on the arthritis foundation website because I wouldn't remember a thing he said because all I would be thinking was "OMG, I have lupus, I'm going to die" which I hadn't been before he said that.

He started me on HCQ and I'm on Diclofenac for inflammation. My PCP commented that I'm on a really low dose of HCQ, so maybe that's why I don't feel any different? I bruise so easily, I look like a battered wife from the hips down.

I'm not sure what I'm asking for, for info and links, and advice, I guess. I'm overwhelmed. In one way, I'm really glad to finally have a diagnosis after 20+ years of this. At the same time, I have no idea where to go from here?

I posted a few months ago about experiencing pressure to stop my ADA accommodations at work, which have allowed me to have a hybrid work schedule as a university administrator battling multiple autoimmune diseases, including lupus.

I have an update.

After spending most of the summer in the office to try to please leadership, I am now being told I am being involuntarily transferred because my department cannot accommodate my schedule any longer. They did not go through the interactive process and try to give me other options. They just told me I’m being transferred to a different department to do a job that’s different than the field I was educated in or worked in for over a decade. They said it’s fair because it’s the same pay.

I am so heartbroken and upset. I have a history of only positive performance feedback. I am very passionate about my career, and I cared about this institution deeply, and I feel so disrespected and wronged. I have worked so hard to get to this specific position and they have no understanding of what that was like as a woman of color with multiple chronic conditions and organ involvement.

I have hired an attorney to help me navigate this. But I wanted to share with this group in case others have navigated disability discrimination at work.

This is how I imagine my lupus (when it’s under control. flare-up lupus is a whole ass anime villain lol). I like how it turned out and thought to share it with yall :)

I have had this sore in my nose for at least 2 weeks now. I used my ear camera to get a picture, so the black that you see on the right is the tip of the ear scoop. Does this warrant a visit to my rheumatologist? ENT?

i can’t help but have this bittersweet feeling towards my life and what it’s brought me. i’ve been diagnosed with lupus nephritis for about a year now and on top of that i also have anxiety and mild depression m. recently i’ve been having a lot of stomach issues and convinced that i have ibs as well. on top of that, my bf of a year and a half cheated on me after everything we have had together. he also reassured me and made me feel comforted and now he’s no longer in my life. thankfully i have a loving best friend and the mercy,grace and love of Jesus, but how can i not be a little deteriorated after all of this. I love who i am and i want to keep striving to be the best version which is why im still hopeful for my future, but i still can’t help but feel a sense of weight on me that nothing is ever going to be how i hope. just wanted to come and vent. any advice or encouragement would be lovely and appreciated. thank you for kind listening ears 😊

Hi all,

Been on medicaid for a few years and am on the hunt for FT job, getting very worried about healthcare costs. I know costs depends on the type of insurance you have, but casting a wide net out here. Does anyone have a breakdown of the your healthcare costs for lupus? from visits, labs, meds, etc. I use Benlysta rn and it's been a great medicine for me. I really worry about the copay / whether or not insurance would cover it.

Right now, I'm tracking the tiers of each med I take to give myself a conservative estimate of out of pocket costs. I'm a visual learner, so if you have a spreadsheet, that'd be incredible, but no need if not. I just want to hear from other lupus folks how much to squirrel away so the disease doesn't make you broke broke. :(

Hi all,

I was diagnosed in March after struggling with symptoms for about 8 years. I was previously diagnosed with fibromyalgia and chronic fatigue syndrome, and also chronic migraines.

I was put in HCQ and azathioprine and it has been wonderful for most of my symptoms. It’s also been helpful for my migraines and stomach issues as well. But the one thing that has not stopped is the fatigue. I feel like most days I am just defeated bc I am so tired.

I also want to say that I am a PhD student in my last year so I have been stressed about my dissertation and applying for jobs and potentially moving, and I’ve been feeling better so I’ve been trying to work out and that sometimes causes flare ups for me.

Idk I just feel defeated right now and I am not sure what to do or feel. It’s been so hard talking about this with ppl that don’t have lupus bc they just don’t understand and I am tired of the “just be positive trope” because I am positive… but I’m just tired.

Any suggestions or advice is welcomed!

just curious

I’ve been on Sotyktu for over a month for cutaneous lupus. My skin is horrible! It’s gotten so much worse. Dr said to give it a chance. Now I have an upper respiratory thing which I understand is also a side effect. Anyone else in Sotyktu that can give any hope? TIA

Hi all!

Been treated for class 5 lupus in the kidneys I was on cellcept but switched to tacrolimus due to copping to many side effects and a 60mg steroid taper.

Next week I'll be down to maintenance dose of 7.5mg of prednisone, but I've had persistent pressure and puffiness around and behind the eyes every day its giving me constant fatigue and lethargic feeling! Anyone here who's had similar problem can give some insight on how long this lasts??

I've been to an optomistrist i am having a steroid reaction, but within acceptable limits...

I am allergic to the binder or something in Hydroxychloroquine. I take Plaquenil for SLE, brand name only as result.

I have been buying from an online Canadian pharmacy because insurance does not cover brand name Plaquenil and it is very expensive in the United States.

In the last month, the Canadian online pharmacy told me that it is not shipping to the United States because of tariffs and scarcity of supply.

My rheumatologist suggested either chloroquine or that I travel to Canada to purchase a 90- day supply of brand name Plaquenil.

Has anyone had this experience recently, and do you have a better solution? Traveling to Canada every three months seems like a lot and
very expensive.

These common side effects of chloroquine are daunting and I am already a chronic migraine sufferer, so anything to add to my headache burden is not acceptable. I’m worried about the gastrointestinal side effects as well as damage to the eyes, just to name a few. I have had no side effects on Plaquenil for 10 years.

Thank you for sharing your experience.

Does anyone get pain after walking a lot
i went to a amusement park today and i walked the whole time we were there for like three hours and left
i was fine until nighttime hit and they feel like achy and like the growing pain you used to get when you were younger
this is why when i go to amusement parks/ walking long distances i take a wheelchair but couldn’t this time and i felt confident into walking, i knew id be in pain but sometimes its worth it.

Hi lupus fam. 38 y/o female here. I recently had a BAD flare in July (Florida), and I’m trying to figure out everything that was a possible trigger. Two definite triggers were: heat exposure and sunlight / uv (general sunlight plus nail polish uv light exposure). I also believe that the red light therapy bed as well as topical estrogen cream may have also been triggers. I stopped red light therapy. However, I’m split on whether to try estrogen cream again, as I’d only been on it for 2 months (twice a week) before the flare, and it worked SO well (dryness relief) UNTIL the flare. Has anyone notificed worsening OR on the opposite spectrum, had relief from flares with topical estrogen cream?

Just wanted to share a bit of good news since this sub seems to be mainly sad stuff. I came back from my appointment today and this was one of the few appointments where my doctor actually listened to me and understood my concerns. Going into this appointment i was worried id have to start titrating upwards on Myfortic as im on 700mg daily. I didnt want to because i was scared it would upset my GI issues again like MMF did and to my surprise she said i didnt need it anyway! Because everything looks good! Im down to 5mg of pred and staying that way until i reach my 1 year anniversary of my diagnosis in March and then we are looking at potentially weaning off provided i dont flare!
She even referred me to a lupus specific counsellor and gave me advice on what to tell occupational health regarding work as i also work in healthcare.

This appointment literally made my day today! I got a celebratory matcha before heading into work. Dont get me wrong i still have my pain and nausea moments on a day to day basis but after months of dealing with a whole heap of crap following my diagnosis this was a pleasant surprise. Dont lose hope! Good stuff can happen to us!

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