I was initially taking 200mg of hydroxychloroquine daily, my doctor cut it to 5 times a week, it has been 4 months on this new dosage. But I have been feeling more tired and recently I am have been dropping more hair too. I wonder if it is due to the change in dose. 😢

Would love to hear your stories about your experiences

Has anyone had anything similar? I have been feeling excessive fatigue, feverish, and achey for a while - - figured it was a flare. Had the worst headache of my life Monday then woke up Tuesday unable to bear weight on my leg. I can’t even pick it up much on my own. Went to urgent care tested positive for strep and the ER ruled out nerve compression, TIA, stroke, and MS. They also mentioned how lupus and strep can cause weird stuff so this might just be a manifestation of autoimmune confusion? Feeling really lost

This will be my second summer since being diagnosed with SLE and I am still trying to navigate the flares from the heat and sun. I feel like every time I even drive even 5 minutes whether it is sunny or not, I will get out of my car with a malar rash and have a splotchy red chest and arms followed by exhaustion. I am wearing SPF daily and avoiding being out in the direct sun but can’t avoid the car. Does anyone else experience this when driving? Does window tinting help? Let me know if you have any other tips to stay comfy in the car. Thanks in advance!

Hey gang,

19F here, newly diagnosed SLE. I just started Plaquenil and I feel like SHIIIIT. How do you people manage? What's it like moving forward?

I know everybody’s lupus is different but I’ve got an annoying lupus feature that has been a feature in my life since I was 20. I’m 5 days out from my infusion(where I get a massive steroid dose, too) and my body is whackadoodle!!

I woke up a month ago joking that “today my foot is broken” because it legit felt like someone smashed it with a hammer. Fast forward to yesterday when I’m finally told “oh no that’s extensor tendonitis!” 😐 Well, I’d bet my shorts that as soon as I get my infusion it will magically be better.

Once my shoulder went out for 2 months. Like I seriously could not lift my arm. Got an infusion and BAM I can lift my arm again.

Terrible, debilitating lower back pain for 2 solid weeks. Laying down for two freaking weeks. Had an infusion….alllll better.

This happens ad nauseam about 2-4 weeks away from a big dose of meds. It’s so annoying. I can count on being completely debilitated by some random joint problem…tendon issues, or old fashioned full body revolt.

Am I alone? Meds are adjusted as far as they can be to be within the scope of what my insurance will allow. I mean, at least I can prepare since it’s like clockwork but holy flying spaghetti monster wHY sO mEAn bOdY?????

Hello, I was diagnosed about a year ago with lupus after my doctor did extensive testing for a little over a year. i recently moved states and now my doctor says she wants to play devils advocate and see if my doctor diagnosed me correctly due to the fact that i am a young woman and he put me on methotrexate. has anyone experienced something similar to this or have any advice? i’m feeling pretty upset about it because it took a long time for me to start feeling better. also to my understanding wont my labs be normal because my lupus is being treated?

Is my hair loss because of postpartum, lupus, or both lolololol.

Asking for opinions of everyone on Plaquenil. I’m 55, was DX w/Lupus 4 years ago. Had symptoms for 5 years prior to diagnosis. I also have type 2 narcolepsy (DX at 18). I have a very rare retinal disorder that caused me to lose the vision in my left eye at 27 due to scarring in the center of my left retina. There are signs of it in my right eye, but touch wood, it hasn’t been active in 18 years and is not in the center of my retina (but could flare and cause damage & vision loss without notice). I see a retinal specialist every 6 months. I told him for years that I thought it was autoimmune as every retinal flare from ages 27-37 coincided with a vitiligo flare and three pregnancies caused bad retinal and vitiligo flares. He didn’t initially agree, but there was a study 10 years ago and it turned out I was right. I have been on Low Dose Naltrexone for 4 years, and was on Benlysta for 9 months, it didn’t help. I’m now on Saphnelo and have had two infusions so it’s too early to know how well it will help. If you’ve read this far, thank you. My question is- if you were me, would you try Plaquenil? I’m in significant pain and fatigue, have kidney involvement and muscle weakness. Thank you!

Hey everyone! So I've been wanting to run a charity event on Twitch for my birthday, since Twitch has a built in charity feature, but I was wondering, what is the best Lupus charity? I know there's a few options but I want to make sure I go through a good one before starting an event like this. Any thoughts and opinions welcomed!

I was diagnosed with SLE last summer; two years prior I started having stomach pain - a gnawing, intense hunger like sensation below my breast bone and above my belly button. My rheumatologist is focusing on my other issues and treating the stomach pain as separate, for my gastroenterologist to figure out. I’ve had this constant pain for 3 years and it’s getting worse. I’ve seen multiple gastroenterologists who don’t know what to do with me. I have documented damage in my stomach and duodenal bulb, of unknown origin, and because I’m not responding to any of the medications they give me, they sort of just shrug their shoulders. I’m wondering if there might be a connection, possibly vascular, and if anyone has GI involvement associated with SLE, how it was diagnosed and connected to SLE, and if they’ve been able to find relief? Any information would be so so appreciated!!

Has any been on Sulfasalazine for their Lupus? It the last ditch effort I start tomorrow before Saphnelo IV. I am kinda scared because I am allergic to Penicillin and Keflex. Haven’t ever had a sulfa drug before. I was diagnosed with Lupus SLE in May of 2021. It’s been a rollercoaster of meds.

Hi all, I’ve had this question going round and round in my head for a while so I thought I’d see if someone has experienced anything similar.

When I start a new medication, I have a really good response to it, and then after a week or two I go back to feeling just as shit as always.

For example, the first two weeks on 20mg methotrexate were the best two weeks I’ve had in years - my energy returned, the pain went away, I was able to do things, I felt my threshold for activities was higher and I didn’t crash as much. I felt mostly “normal” like a healthy person. But then for no reason, that high wore off and I started sliding back to my usual (high) level of fatigue and other symptoms. My body has reacted similarly when I started valaciclovir for a suspected recurrence of a virus, and a few years ago taking rhodiola (before I went on any meds). My body goes WOW THIS IS WHAT YOU NEEDED WE LOVE THIS but then it doesn’t last.

I have been suspecting that I have something else bothering me than just the UCTD/SLE like maybe a histamine intolerance or gut issues or [insert other theory here] and that maybe my initial response to a med is how I’m supposed to feel before this other problem drowns it out.

I’d love to know if anyone else has this? It’s so disappointing and I’m struggling at the moment as I’m on MTX, Plaquenil, the final 1mg of prednisone (have been tapering) and a few other things and yet I’m still unable to work, run errands, have quality of life etc as my symptoms are so bad and inconsistent. I see my rheum in a few days and I don’t know what else they can do for me other than say “maybe it’s chronic fatigue/fibro, try meditating.”

Thanks in advance.

Story of my life.

I was only officially diagnosed with SLE about two weeks ago, and the only reason why I thought to look into it was because I have a million other health problems and upon obtaining my medical records for an upcoming surgery, I noticed that it runs on BOTH sides of my family (my mother, father’s mother, and sister all of SLE, and I initially thought that in my sister’s case it was just bad luck from medications). In every case, symptoms were exacerbated by pregnancy which is when every single one of them found out.

I’m in my mid twenties and childless, and I’ve noticed that a lot of my symptoms are reflective of SLE too. I have several, SEVERAL food allergies and intolerances, I have pectus excavatum, asthma, heart problems (which I thought were because of PE), chronic periodontitis, and I’ve had problems with my lumbar spine from herniated disks and started experiencing nerve problems that my orthopedist insisted was unrelated to the disks that are currently impacted (burning in my hands and fingers, weakness in my arms, especially when I am sick, random cramps in my feet and my calves even when I am asleep). I have an IGA deficiency, so I am sick very often. I get random eczema breakouts, supposedly from histamine intolerance.

I immediately went to my doctor to ask for a test, and he said that my symptoms weren’t evidence enough to be tested and that I’m most likely wrong, but I insisted he do it anyways. My blood work confirmed my suspicion, and he immediately referred me to the rheumatologist and a neurologist.

I’ve read a surprising number of posts on this post saying that diet, sunlight intake, etc aren’t very helpful to manage SLE. Please don’t berate me because I’m very new to learning exactly what lupus is and what exactly affects me because of it. However, I will say that in relation to my other health problems, I’ve made a lot of lifestyle changes that have already helped a lot.

I usually eat a Mediterranean diet (heavy on whole veggies and fruits, grains, fish, etc) just because it helps me personally get the nutrients I need since I have so many allergies, I personally try to get as much sunlight as I can which usually helps with my mood (though it admittedly puts me to sleep—but I usually feel energized after a nap), and I’ve become a bit of a gym rat since having my disk problems. As helpful as it all is for my own body, I still struggle with things like cramps, intense fatigue and brain fog, and random burning and cramping in different parts of my body. There’s about a week out of the month, sometimes two, where I have to cocoon myself and just… BE sick before I can have two productive weeks where I schedule all of my work meetings and social engagements.

This is a somewhat long rant-y post, but I guess what I’m trying to ask overall is, how does SLE affect you and what solid lifestyle choices have you been able to make that actually helps you (other than taking medication, because I don’t know if my rheumatologist will put me on one especially because I’m having a relatively major surgery very soon)

I’m currently taking benlysta but I’m having a lot of pain. I have been on it since 2017.

Has anyone experienced success with reducing pain when switching to saphnelo?

Hi everyone! So the last year or so I’ve been experiencing GI problems. Abdominal pain in the upper left of my stomach, nausea/vomiting after eating, and just a dull ache.

I saw a gastro who did an endoscopy, he said I had inflammation in the stomach lining and nothing was wrong with my gallbladder, appendix, and so on. Then he moved?? So I quite literally never got an answer as to why my stomach was inflamed and what the reason is I can’t eat.

I have a new appointment with a new doctor, but GI docs are booked so far out that I can’t get in until November. Does anyone have any foods they recommend when you aren’t hungry and get sick from most things- but I can’t keep losing weight!! I’m not celiac so gluten doesn’t seem to be an issue and to be honest cheese is one of the few things that doesn’t kill me- so I don’t think going dairy free is the cure either. Either way- My face is slightly hollowed and I look a little like the corpse bride 🥲

This all started when my lupus numbers were not doing great and now we are going on almost two years. Has anyone had this issues or have lupus enteritis? I just learned that was a thing but I’m not a fan of self diagnosing. However with the limited info about it, just curious if others have this diagnosed?

Thanks in advance!

This is my first vacation since being diagnosed in October of last year. I am having a great time in Florida where it’s 85-90 degrees and a welcomed changed from the cold snowy state I live in, but I’m so exhausted after doing minimal things and I need so much sleep and rest.

I appreciate my fiancé as he is so accommodating, understanding, and patient, but I feel bad that we aren’t doing a lot of the things we talked about doing because I’m exhausted.

On top of this my skin is irritated (I am wearing sunscreen), my joints hurt, and I want nothing more than to sleep. A lot of this vacation was to rest as I never get to rest, but that’s truly all I want to do. I’m staying hydrated. I feel like a party pooper even though I know there’s not anything that I can do, but it’s still a hard adjustment especially because I used to be able to wake up, drink, go swimming, go out, go to excursions, etc. and be fine. Even lying by the pool just made me so tired.

Makes me not want to even vacay especially with other people because I feel like a burden. How do you guys successfully vacay?

My rheumatologist who I loved left our hospital network so he’s no longer covered by my insurance. I went to the rheumatologist he recommended yesterday. Like other people have experienced, he was questioning my diagnosis. He doesn’t believe my labs are reliable enough methods to determine lupus. However, he’s leaving it as lupus in my chart and allowing me to continue Saphnelo which has been life changing for me and helped me to feel somewhat normal finally. It really bothered me that he was basically bashing my prior doctor, saying how he was the specialist and had so much more experience.

I’m just not sure what to do because I really didn’t like him but on the other hand he’s letting me continue the treatment that’s helping me and he’s not officially taking away the diagnosis (although he would be inclined to put it back at UCTD). I’m afraid if I try someone else it could be worse, and even potentially stop my treatment. Has anyone been in a similar situation?

Hi everyone,

I was at the ophthalmologist today for a check up and she found multiple spots/deposits on my retinas and was very concerned and so referred me to a retina specialist.

Now here’s the thing, and please don’t berate me. I’ve already been beating myself up for this. I haven’t been taking my meds for 1.5 years. I’ve been prescribed Imuran and Plaquenil for the SLE but convinced myself that I got better and didn’t need them anymore with all the weight I put on and the management of my symptoms generally.

I’m so stupid, I know. And I regret it. And now, this could have been prevented.

Has anyone had spots on their retinas? What does this mean? What’s the prognosis?

Just wanted to see other’s opinion on how they feel about seeing content creators use social media to share their experiences with lupus?

Do you relate to their experiences? Does it help you understand lupus more? Do you like it? Why or why not?

-please, no specific creator names-

I’m just wondering….for those of you who the butterfly rash….does your rash feel like heat is emanating from it? A bit like it feels when you start to blush, when you get embarrassed or something (not like you have gotten a sunburn as the malar rash I get it is absolutely not ever painful).

I remember (and this couldn’t have been better timed if I’d had control over it) that when I was in my first appointment with my first, and she was asking me questions, my face felt like it was emanating heat. I kept apologizing to her while it was happening, as I couldn’t understand what was happening. It had started doing this the previous day, and just kept getting more and more pronounced.

I’m a really confident person who doesn’t get flustered very often, so I absolutely couldn’t figure out what was happening. I wasn’t nervous, and I wasn’t scared.

Back then I knew next to nothing about lupus, and the thought that this disease I knew nothing about was the disease that was causing most if not all that was going wrong in my body for as long far back as I could remember….it was a shock.

I had never experienced a major symptom of any disease right in front of try the doctor before that.

Well, I thought I was really doing well finally and amazed at how I was pushing through my walking but now after 18 days of exercising (just walking), I feel like absolute shit. Before I could only make it 2 days so I guess this is progress but I'm worried my flare is about to get really bad. I'm starting to get the lupus headache, which in the past has required prednisone. And my body is aching, I'm having chest pain, and weird shock like pain in my head that I get with my bad flares. And dizziness. I just need to sleep for like a month now. Needless to say I'm taking an exercise break.

I’ve been diagnosed for a little over 10 years. I always had some redness come and go in my face but within the last 1-2 years I’ve noticed it getting worse. My other symptoms come and go with flares and have remained the same/stable. Could it be rosacea developing? I have a rheum appointment in June and will ask but just checking if anyone else has this experience? Would it be worth seeing a dermatologist? I don’t have any other skin symptoms. Pictures are from today. TIA

Has anyone experienced pain while their lupus is apparently stable based on bloodwork? I have been experiencing pain in my body for the past two years most recently my feet are killing me. I have tried acupuncture, a chiropractor, physical therapy, etc., and nothing is working. I’m pretty miserable.

Hey all, I’m 24 years old and been diagnosed with lupus for 3 years now. I’ve been stressing for a while and have been feeling super loopie. My body aches, my bones are starting to crack again (joints) and my job environment is just so stressful. I’m a cook and I do carry heavy things, I have to cut slabs of meat and it’s so heavy for my wrists. I am on my feet most of the day and people just tell me to “get through”. I was exposed to severe heat the other day and my body has been out of whack since then. I’m filing for short term disability, lord’s willing I’ll get approved. But I’m just so tired of not being heard, nor being seen. I’m a good worker and I try my best with what I have going on. But I frequently call out due to my health. And I just get weary, man.