Sorry for the long post, i guess i need to vent. I'm currently on three Lupus meds, and my current rheum believes I absolutely have to feel better. They do help with fatigue noticeably, but some issues are getting progressively worse. I cannot lift my freaking legs. I cannot go up the stairs. My rheum keeps sending me to the neurologist, who usually sends me right back (this time, he send me for a bunch of MRIs) My primary insisted I see a new rheum he for a second opinion, so I did. I thought that a new doctor may switch some meds around, or try something new. I liked the location since it it really close, and i cannot drive too far, my leg gives up and I cannot stand heat, it is literally making me sick for hours after.

I saw the nurse practitioner today, who didn't ask for any symptoms or tried to examine me, but asked for the most recent blood work. After a few minutes of going through them she declared i may not have lupus at all. I told her I have every freaking symptom of it. I pointed on old tests where my dsDNA was flagged, and she argued it was pretty low, and it is negative now, so it is good. It is good because I am on three meds for years, I told her that. ​My joints are swollen, im in level 7 pain lately, I cannot use my left hand since my fingers look like sausages, I'm stiff like a piece of wood, I'm feverish all the time, I have rashes on my face and all over my body, my brain fog is so bad that i got lost on the way to their f-ing office in the area i drove tons of time, but my blood work is great, so I am completely and utterly healthy!

I directly asked her, if it is not lupus, what is it, then? Could it be miositis, since i got specific antibodies for it? She started saying that it could be anything, since on the panel only one miositis marker was flagged, but went silent when I again asked her , if she can name a specific condition. She only mumbled about waiting for the MRI results.

Surely, I won't go back to that office ever again. They set an appointment, but i am cancelling it. I really need to find a doctor in my area. At this point, I just don't have any strength to do it again., I went through years of trying to get a diagnosis and treatment, and the waiting game crippled me. I guess I will start looking again, tomorrow. Please wish me luck.

I've been diagnosed with lupus for almost 3 years now, but these spots have only started showing up in the last 3 months or so.

They start off as dry spots (almost all are circular) anywhere from my fingers to my shoulders, and then they turn into white spots. When I get really warm or when sun hits them, they get red and sometimes slightly raised, then fade back after I've cooled down. The pics included are about an hour after being in the sun and heat, vs this morning when I haven't been exposed yet.

They don't itch or hurt, they're just there and making me nervous. I've had tinea versicolor before and it doesn't act the same. I'm still a month away from my dermatologist appointment I asked for 2 months ago, so I'm just wondering if anyone has an idea of what it could be!

My urine protein is in the 60s which is an improvement but my c3 went down from 100 to 40 and c4 went from 12 to 5. My lupus symptoms haven’t gotten any worse but im concerned.

So I am a diagnosed lupus. I occasionally get Livedo like lace pattern on my thighs, knees and part of upper shin. It's not related to any weather change. Perhaps more has to do with how I am feeling physically . Like I was at work yesterday feeling crap. I went to the toilet and noticed how horrible my legs looked. They stayed the same till after I rested and had some nsaids. I was wondering what everyone's take it. I am not even sure if its Livedo.

I really need to find a way to inch my sleep schedule closer to normal sleep/wake hours. Too many nights of not getting asleep until 3-5am because I’m adjusting to getting on or off meds, and then not waking up until noon.

Really feeling like a vampire, lol.

If it wasn’t for the heat it would at least leave room for some nice night time walks.

nephritis** (Post title spellcheck)

I've been on Cellcept for a year now, and my doc switched me to Tacrolimus(2mg/12hrs) last week to accommodate my pregnancy planning for next year. My Nephritis is under control, and he thinks it's the best time to switch to pregnancy-safe meds if I want to conceive next year. I was reactive to Cellcept last year and was on a low dose. Now, with Tacrolimus, my body is burning. My entire back, my feet, my stomach, my abdomen, and everything feel like they're on fire. Body pain is constant. I have gut sensitivity, and I react to everything I eat, although I'm gluten- and dairy-free. I have been experiencing an increase in gas and had diarrhea between days 2 and 5. Now I don't have diarrhea, but I still have everything else going on.

Did anyone experience anything similar with oral Tacrolimus? Are there any other meds you are on that are pregnancy safe, and how did it work for you?

I want to start by saying I am a very anxious person (diagnosed OCD), but I know to trust my doctors. I know they're the ones that know the most about my specific situation and what to do moving forward. Of course I will be talking to my doctors about all of my thoughts and concerns!

I know medications that suppress the immune system can put you at higher risk of cancers.

A few years ago I had a scan done and they found nodules in my lung. Very small, doctor wasn't worried but wanted to monitor it. Got my updated scans and they hadn't grown doctor said things were staying good!

However, I started benlysta last year and this year my lung scans show masses that are very large. Grew very fast and there are a few of them. I have a biopsy coming up in a week and a half, but im mentally preparing for this to be cancer with how fast they're growing.

Would it be irrational to feel like the benlysta caused this? Has anyone reading this experienced similar? If so what was your experience.

I'm trying to stay as calm and collected as possible so I can go into this with a clear head and a lot of hope. Currently struggling with that lol but that's the goal!

Hi, 20M here. I’ve been struggling with very bad mental health for a while now, and ever since my lupus nephritis diagnosis about 17ish months ago it just seems like all aspects of my life are progressively getting worse and i feel like im at rock bottom. I’ve been struggling with suicidal thoughts recently with no one to really talk to.
I’ve been considering talking to my primary doctor about this and then getting a referral to a psychiatrist , but i also wanted to know if anyone else has faced something similar and if they’ve been on antidepressants or other meds to help with mental health, and if yes, has it even worked?
I know that being on lupus medication narrows down the other meds you can take, but what have your experiences been, side effects and such.
Some people might just say that im young and that things will fall into place as time goes by, but this has honestly crippled me to the point where i cant complete daily tasks and i’ve stopped taking care of myself and eating.

For almost every day for the past 6 months, I seem to have a low grade fever at least once a day. They're about 37.7 - 38.2C (99.9 - 100.8F, I think). I think they used to come and go more, but recently they're lasting for hours and generally making me feel dreadful.

Is it damaging to have higher temperatures every day? Is there anything I can do help stablise my temperature more?

I take 200mg Hydroxychloroquine at the moment. I told my rheumatologist about the temperatures last month, but she didn't say anything.

I started methotrexate on Friday. I'm miserable. The nausea has been awful. I did take the folic acid. I don't want to give up on this working. Has anyone tried microdosing THC and if so, did it help?

Hello. I was dx with Lupus in January. I resisted taking medication for it until the end of June. I was doing fine... However, my Dr pressured me to take Hydroxychloroquine. I did not want to because I have a serious history of severe allergic reactions to drugs. I finally relented and took 9 days of the medication. I then started a severe allergic reaction. It has been 21 days since I have taken the medication and I am still having to take round the clock antihistamines and if I don't, I get hives, welts, severe itching, and an itchy dry cough. My question is this: Hydroxychloroquine has a very long half life. 50 days. Does anyone know at which point my body will likely stop reacting to it, such as once a specific percentage of the medication is eliminated? Or do I have to wait over 200 days? I am losing my sanity already.

hello! i (31F) am diagnosed with tumid lupus for 11 years now. tumid lupus is separate from systemic and contained to the skin. i recently went to the doctor for fatigue and my labs showed this. my understanding was that tumid lupus rarely turns into systemic lupus and has a negative bloodwork. Any insight?

Hello everyone,

Does anybody have pain in their feet ? My doctor seems to believe mine are unrelated to lupus, but they always worsen in the summer, with a lot of sun exposure (sorry i know i shouldn't).

Hello, I was curious as to how people adjust their life habits because of lupus, is it safe to continue smoking and drinking occasionally or is it a strict no no?
Have any of you continued either of these things and noticed disease activity getting worse or there not being any significant impact? I know that some meds react with alcohol.

My sales lady saw my bag and was like “wow I love your bag, especially the fuck lupus”. I got excited because I thought she was *one of us*.

So I asked if she had lupus. Her exact response: “oh no, my grandma and aunt had it, they’re dead from it though” and just carried on convo - I was so caught off guard I audibly laughed.

TL;DR- a lot of Lupus symptoms I have aside the major ones haven't cleared up after over a year on Hydroxychloriquine, independent of flare-ups. Does this mean its not working well? How will I know if it is? Has this happened to anyone else, and what were the next steps for you in your treatment if any were needed?

I got diagnosed with Lupus and Sjogrins last year and have been on Hydroxychloriquine since May 2025.

I noticed it improved the worst of my issues, like the pain down my spine that felt like my spine was falling out, or the weakness in my muscles that made it hard to stand or hold anything, or the crazy, sleep-for-days fatigue.

However, I've been tracking my symptoms closely and I've noticed a lot of symptoms I have haven't really cleared up at all- the mouth ulcers/sores, hair loss, joint pain, and drowsiness that feels like i can't fully wake up and I spend a large majority of those days in bed going in and out of consciousness are still present. I also still have a lot of bloating, but i think it may actually be inflammation.

The sores manifest as red patches (seperate from actual ulcers which I get frequently) on my tongue, gums, cheeks etc. I tried to ask my rheum if they were both due Lupus but basically got a 'hmmm' in response, so I'm assuming they are.

The hair loss actually cleared up for a few months but has come back. I'm pretty sure joint pain is always going to be present lmao, so I wasn't expecting it to clear that up. I still get random days where it's particularly bad or sore and I need extra help moving etc.

The drowsiness/fatigue is easily the worst one. It actively limits my ability to seek work, keep appointments, and even once I manage to wake up, I'm brain-foggy, drowsy, and confused, so the whole day is wasted.

I still get flares of higher fatigue, joint and muscle pain, headaches, and inflammation if I've overworked myself, but the problem symptoms either persist like the hair loss and sores, but the joint pain randomly spikes from it's base level and the drowsiness occurs totally randomly. I've been trying to track it, but there is no pattern.

I spoke to my rheum, but she didn't want to hear it. As soon as she heard that Hydroxychloriquine had helped with some symptoms, she didn't care and basically kicked me out of her office telling me to go to my GP for 'small things'. I'm also autistic, so I struggle a lot to advocate for myself or understand my symptoms well or clearly.

Sorry if all those details were unnecessary. The questions i have are as follows;

1. if these symptoms don't clear up, does that mean the treatment isn't working?

2. How will I know- is there some kind of test I can ask for?

3. Did your symptoms totally clear up with Hydroxychloriquine? If not, did you take it to your rheum/find a good website, and if so, what was the advice given?

4. What was the next step in your treatment?

I'm trying to get a new rheum and would like to pursue further treatment if it's needed, but none of the support websites cover this stuff and in my country doctors LOVE to brush you off if you don't know exactly what you need (and sometimes even when you do) so I'd like a little bit of a knowledge base for the next one.

They want me to see a hematologist now. I’m terrified, my best friends dad growing up had lupus and died from a blood clot.

They said a lot of my blood work looked okay, my inflammation even improved since being on benlysta but these markers have been high now 3 times in a row which means it’s time to see a specialist.

My Anti-Cardiolipin Ab, gM has been elevated to 39 and 40 more than once. Is this really bad? I guess it’s not really bad as so far I was told no restrictions.

But I’ve known more than one person to die of blood clots with lupus so it was one of the scariest things I could’ve heard today.

I’m also worried even if it doesn’t kill me, if it gets worse will it affect my quality of life. Will I still be able to fly? Go on road trips?

30F First time, long time…I never make posts but I see so few if no reviews on this option for taking Saphenello because it is so new to the US (received FDA approval April 2026)
A little background I’ve been receiving Saphenello infusions for over a year, it’s proven to work quite well for me. I still get occasional flares, still experience symptoms such as pain, swelling of my legs hands, feet, and joints, so I am/was by no means in remission during my time on the drug. I’ve maintained pretty decent labs with a reduction in inflammation markers (other than occasional spikes during really bad flare times) without a daily steroid, but I still take Hydroxychloroquine every day. I have the tiniest hardest to access veins and terrible needle anxiety so in the beginning I had to have my mother drive me to my monthly infusions because I had to be on Xanax. About 2/3 months ago the nurse administering my infusion could not insert a picc line on me after 3 tries, my blood pressure dropped to 82/57 and like usual I nearly fainted. My doctor who is a literal saint pulled me from the infusion floor into her office and said we’re not doing this anymore, put me on Rinvoq which is used for RA (pill) so I wouldn’t have to do needles. Two days of taking it and I had fever, chills, body aches, pain that rivaled some of my most intense flares so I called her and begged for the Saphenello auto injector that we’ve been tracking development of since I started. She put in the order and I continued to take the Rinvoq as a stop gap. 2 months no infusion and 1 month struggling on Rinvoq, I finally get the auto injector delivery. I go in office to get taught on how to use it, she makes me do the first one but held her hand over the top of the injector just in case I panicked and couldn’t hold it down.
Injection 1: Friday around noon nerve wracking as someone with needle phobia, you don’t see the needle at all so it kinda helps. However it shooting into your leg hurts and the medication burns like fire going in so I screamed for the 15 seconds it took for the medication plunger to fully go down at which point you hear a click and you can finally release from holding it down. My lovely insurance denied numbing cream. Injection site right leg. Still have tenderness and soreness on injection site and it’s been over a week. Results felt okay during the day other than my leg being hot to the touch where I injected but after working for 7 hours felt what I can describe best as being powered down. I left work and got in the car struggling to keep myself awake for the 30 minute drive home made it up the stairs into my house and laid down on the floor at the top of the stairs between my kitchen and bathroom. I had about an hour of floor time before I could crawl myself into the shower to do a sit on the floor shower. Now when I first started Saphenello infusions I had to come home and immediately go night night. Between the Xanax and then the general fatigue the drug gave me, but that effect long since subsided. So not crazy but also wasn’t super expected for me to have this reaction. Next day I was super tired as well some general all over achey feeling, and my legs hurt. Rest of the week relatively uneventful.
Injection 2: this time I decide to save myself from the anxiety and have my husband administer it. Injection site left leg. This time I start having a panic attack before he does it because I’m anticipating the pain and immediately after it I start to black out so I go to lay down. This time I used lidocaine 4% cream applied 30 minutes before to try to numb the area—nice try it still hurts. This injection I did at 10pm so I immediately put myself to sleep knowing I’m probably going to get some fatigue. Since it’s Friday I have the weekend to recover yada yada. I wake up Saturday my leg is sore from injection site, my knees are throbbing with joint pain, and I am remarkably exhausted. This lasts up until today Monday. Where I’m still so tired and generally feel like I have the flu from the body aches.

Now don’t get me wrong — I’m hopeful, Saphenello has been a great help to me in my treatment journey. So I’m hoping after a few more injections my body gets used to this dose. However the auto injector hurts like a son of a bitch. And my injection sites feel so sore days up to a week after. My next dose I intend to try the back of my left arm to continue to rotate injection sites, but not looking forward to dead arm. I think it’s a good option to keep cost down as infusion center was more expensive. I got quoted $75 copay for the drug, but with the extra Astrazenica copay assistance I have yet to receive a bill for this shipment. [They ship a months supply 4 injectors in a big cooler with cold packs. Once it arrives you gotta get it into the fridge as soon as you can. Thankfully my mom could bring it in for me because it got delivered in a heat wave. Package requires no signature. I added on a sharps container because I didn’t have one]. I have a friend who travels constantly for work and chose Benlysta as treatment (they are currently trying to get approved for Saphenello) because it allowed for more freedom from the monthly 1hr long infusion appointment so I do hope this makes traveling a little easier before I’d have to time my infusion to right before I left and cross my fingers that the decreased immunity wouldn’t bite my ass. The drug does need to stay refrigerated so I will be buying one of those electric cooler canisters, [ https://www.amazon.com/dp/B0FS28HGPC/ref=sspa_mw_detail_2?ie=UTF8&psc=1&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9kZXRhaWw&th=1 ]for long flights and trips lasting over a week. It can be stored at room temp for 1 week and still be viable but must be injected at the end of that week and cannot be returned to the refrigerator. So going camping for a long weekend I could just chuck it in a backpack which is nice.

Here’s to hoping some massive medical drug science break thru happens in the next year where we can make the leap to biologics in pill form, cause I’m not sure how long I’m gonna last blasting myself with needles every week as of right now. And good luck to everyone in prior auth hell.

I had my first day back today after 5 months sick leave due to me being diagnosed. Its a phased return so i am only doing 3hrs and 45 mins for the first 3 weeks then increasing gradually back to full time after that. When i got there the nausea, headache and fatigue set in after about an hour. I cant help but feel like this is gonna be the rest of my life now and if i can just barely handle 3 hours at work how can i handle these symptoms and have a career for the rest of my life? Im only 26. Im scared for tomorrow when i show up to work again, heck im scared for my future at this point.

Hi, has anyone been approved for loan forgiveness due to their lupus? I want to know if the FSA has approved someone due to it. I do not have a a disability determination from the SSA. I'm sure my doctor will give a written statement about my lupus, but I want to make sure I'm not wasting time.

Hi there!

I was diagnosed with Lupus a few months ago now and beyond the lifestyle changes and frustrations I was wondering if anyone here has experience with menopause and how it affected their lupus?

For context I am 28 and I have pre-menstrual dysphoric disorder (PMDD) which has made my life hell and I’m considering getting my ovaries removed so I don’t have to deal with it anymore (I’ve tried meds for years now with minimal success). I figured I should reach out here to see if anyone has input, my concern is getting rid of one problem just to have another since menopause is obviously no walk in the park.

I plan to speak to my gynecologist when I can but my rheumatologist said menopause could help with my symptoms from an autoimmune perspective since estrogen is a contributing factor. Obviously I’d still likely take an hrt patch for bone and heart health, but I wanted to see if anyone here has any thoughts or advice <3

Does anyone know a good symptom book that’s at least a year? I’m so sick of these 120-day books, but as my lupus and arthritis go hand in hand, I really don’t wanna have to write each and every symptom daily or have a billion loose papers. Is there a year symptom book on the market?

Im n a flare and slept all weekend. Back at work now and I feel like I could fall asleep at my desk. I can’t do my analysis like usual and thinking feelings like I’m treading through pudding. My brain just isn’t processing, like all it’s ever is going to keeping me awake. I’m so exhausted I want to cry. Just venting I suppose.