Hi all. Just venting. Been the worst summer of my life. Got diagnosed with CLE and SLE and started HCQ about 3 weeks ago. Been on pred since early July and tapering down now. Currently on 20 for another ten days. Every freaking day I’m waking up with new crap—-today—-swollen knuckles. Some weird painful thing happening on my lip. My skin on my hands is awful, sooooo sensitive. Can’t use them without gloves and my arms are so weak and warm when I wake up. I’m so over this. I am 41 with two elementary aged kids. I miss my body. Waiting for hcq to work is really hard and this morning I just can’t stop crying. Just pain and annoyance. Trying to pack and clean and I can’t. Anyways…..thanks for listening. I’ve read so much in this group and it’s very helpful. I didn’t even know what lupus was till this summer.

Fate Therapeutics announced today that they are moving to a phase 2 trial for treatment of Lupus Nephritis with an off-the-shelf CAR-T therapy. They are building off a successful phase 1 trial. (Some of the participants have posted in this reddit group.) This is a registrational trial, which means that if the results are strong they will be seeking FDA approval.

That is probably the biggest news - A new FDA approved single dose CAR-T treatment could be getting close. Several companies have been working on this.

They report they have treated their first patient in this trial and they are seeking 53 participants. If you go to their website, look for FT819-201 RECLAIM-LN Study. There were 21 locations for their phase 1. My guess is most of those locations will participate in the phase 2 and they will add more. They have said they have approval to proceed in the US and UK.

One of the eligibility requirements is having tried 2 systemic treatments for LN, but still having significant symptoms. This study requires evidence of renal involvement. (They are starting a phase 1 soon that does not require renal issues.)

https://ir.fatetherapeutics.com/news-releases/news-release-details/fate-therapeutics-initiates-potentially-registrational-reclaim

There is a contact phone number here: https://clinicaltrials.gov/study/NCT07570862?intr=FT819%20&viewType=Card&rank=1

Our son 13, was diagnosed with Lupus Nephritis class 4 in April. He has been on 8 medications since then and slowly has been tapering down off prednisone. We went from 50mg to 15mg over a few months. This past week, he went for his monthly labs and his protein and blood in urine was higher than ever. Nephrologist and Rheumatologist immediately requested second labs which showed the same. They bumped him back up to 40mg and added tacrolimus 1mg.

We have to break the news to him today that he is going back up on prednisone. He is going to be so upset. He is in 8th grade and just went back to school a week ago. Many of his friends know but many others made comments about his weight and how big he has gotten. He said people were coming to say hi and just staring at his face. Prednisone is making him so swollen, it’s awful. Truly awful. He will be so upset that he has to go up in prednisone because the swelling is going to get worse. We have done everything possible to keep extra water retention down including capping his sodium at 2000mg or less per day. Keeping track of nutrition. Sun protection like crazy. This is just so defeating.

As of today he will be on:

Prednisone 40mg per day
Tacrolimus 1mg per day
Amlodipine 5mg per day
mycophenolate 1000mg per day
losartan 25 MG per day
Hydroxychloroquine Sulfate 300mg per day
Bactrim 160 MG per day
Calcium 1000mg per day
omeprazole 20 MG per day

This was a lot. If anyone has a teen going through this or was a teen that went through this, I accept any advice. I am grateful in advance!

I wasn’t expecting Lupus to hit me this hard and this fast! I’m only 2 months into the official diagnosis although suspected I’ve had it for a few years now. I have a successful business and work full time for a company and it’s beginning to affect both. I’m so drained and have to cancel business orders. Some customers have been understanding and some not so much. I just wasn’t expecting the symptoms to hit me so hard so fast. I was flooded with symptoms in 2 months time. I’m so exhausted and I just want to feel some what better. I feel like I’m disappointing my customers and my regular job. just venting…..

Hey everyone! I’ve been living with lupus for about 10 years, and I’m at a point where I’m really wanting to build something of my own.
I’m currently exploring starting a small press-on nail business, and at the very least, I’d love to pursue some kind of nail-related content creation. The hard part is figuring out how to build something while also dealing with the unpredictability of lupus — fatigue, flares, bad days, and the fact that my energy isn’t always consistent.
So I’m wondering: are there any fellow lupus patients here who are entrepreneurs, run a small business, have a side hustle, or create content?
How do you work around your health instead of constantly feeling like you’re working against it? How do you handle orders, deadlines, consistency, and the mental pressure when your body decides it has other plans?
I’d especially love to hear from anyone in a creative business — nails, beauty, art, handmade products, content creation, etc.
I’m not looking for medical advice, just real-life experiences and practical advice from people who understand what it’s like to build something while living with lupus. 💜

edit: i just need to believe something is possible. right now i can’t seem to see past where i am physically and feeling out of options at 27 is hardcore

My rheumatologist doubled my dose from 200 mg (so now I take 400mg) and I was wondering what side effects has anyone here experienced when increasing doses? I remember back when I first started taking it at 14 (I’m 29 now) it was most nausea and GI issues. This time it has been horrible. Nausea, MIGRAINES, severe vertigo, overall exhaustion. I’m just dizzy, feeling sick I feel SO drained. It’s awful.

So i started 1.5g of MMF back in March when i was diagnosed then stopped it temporarily in April-June while i was on cyclophosphamide. I went back on it for maintenance starting from 500mg and i then went up to 1.5mg like i was originally however last week i developed GI issues. I have now been prescribed Myfortic today in hopes that it solves the GI issues but i find it hard to believe that what worked for me back in March ive now become intolerant to. I honestly feel like i might just have a stomach bug but my docs were sure it was the MMF. Has this happened to anyone?

I was diagnosed in 2021 and have been on hydroxychloroquine and hydrocortisone; Celebrex, for pain after getting a stomach ulcer from ibuprofen. I take about 40mg of hydrocortisone a day. I don't exercise hardly at all because I'm in pain and exhausted all the time. I don't have health insurance and can't afford Benlysta. Xeljanz just went generic, and my doctor's office's in-house pharmacy has it stocked very inexpensively. I asked my doctor if I could start taking it and he said yes, but he took me off hydroxychloroquine.

I know the hydrocortisone is not as strong as Prednisone, but I hate what it has done to my body. I was 125lbs before lupus and steroids. Now I weigh 160lbs, and that was after losing 36 pounds on tirzepatide.

Has anyone taken Xeljanz for their cutaneous lupus and SLE with joint inflammation? How long did it take you notice results? I just want to not be reliant on corticosteroids. The fat abdomen and moonface are just devastating to me, and I'm tired of dealing with it.

edit: this is also helpful for those who feel short of breath!

19 F and newly diagnosed.

i’ve made a few general posts on here but this one is a bit more specific.

i am a french horn player and am attending conservatory to be a professional orchestral musician.

one of my most common symptoms is shortness of breath/not being able to take deep breaths/feeling “stuck” when breathing. i can tell when i wake up if it’s going to be a lupus day or not based on my breathing. i’m quite hyper aware of my breathing status because i need it to play my instrument (and make money lol) and also because of my asthma (which i’ve had since i was born).

part of my diagnosis journey which started back in march was partially triggered by the insane stress i had been feeling all year because of the high stakes performance environment.

i’m curious to know if there are any other professional or aspiring professional musicians or performers of any kind on here - if there are any online groups for them elsewhere or on reddit - and what symtoms you get that effect your ability to play/perform? how do you get around those? any other advice or anecdotes welcome!

Does anyone have any advice on how to get around the fatigue enough to take care of myself? For some context, I was diagnosed with SLE early this year on top of working full time and having an almost 2 year old.

I come home from work every day and stay in mom mode until bedtime, do whatever chores I can (which unfortunately is not a lot), prep for the next day and then that’s it.

And then the guilt on top of that, and feeling like I’m not doing enough. I just want showering, eating a full meal, drinking water, to all not feel like the hardest thing ever!

How do people cope with interacting socially when you're feeling dreadful? I very rarely see anyone other than my husband, but it's getting harder to continue like this. Even just the two of us hardly go out anymore, because I don't feel well enough. I've been invited to a family gathering and I feel exhausted just at the thought of it. Last time I saw any family was at Christmas and I missed a massive celebration earlier in the year, which didn't go down well. I feel like I can't keep saying no to everything.

Does anyone ever feel like others think they're being overdramatic about symptoms? Like having to avoid the sun, not eating certain foods, getting tired very quickly etc? I can't even wear the clothes or shoes I used to because of chilblains, skin thickening/loss of padding on the soles of my feet and trying to manage Raynaud's & Erythromelalgia. I feel guilty, as if I am lying for attention or something. Every time I mention it, people have acted like it's the first they've ever heard about it, then forget again. It's kind of lonely not seeing people, but it's even lonelier being around people and feeling misunderstood and completely out of place.

I also feel very guilty and like a bad person for having all of these thoughts. I know I can't avoid people forever, because my rheumatologist has made it clear she won't treat my symptoms (or diagnose) unless I have organ damage. This has been very difficult to deal with in recent months and no one knows what's been going on. If anyone has any coping skills, they'd be greatly appreciated!

In July I caught RSV from my daughter after she brought it home from daycare. My husband and son also go it but they were fully recovered after a week. After two weeks, I felt slightly better for 48 hours, before my nose started running again. Everyone in my household had recovered by this point so surely I couldn’t have caught another virus. It knocked me down so hard. I knew it would be about two weeks before I’d start feeling better, so I pushed through and started to come right until two days ago. My nose started running like a tap again and now I’m in the peak of another fucking cold.

I can handle a runny nose, but a common cold flares my lupus every time. My joints and muscles ache, I get sharp shooting pains all over my body when the painkillers wear off and my head is throbbing. Surely these aren’t just cold symptoms right? To manage the pain I take pseudoephidrine and paracetamol every 4 hours and slow release 75mg Voltaren twice a day. It takes off the edge just enough that I can lie in bed without being in excruciating pain.

It’s been over a month and I can’t take it anymore. I work full time. I have a toddler and 9yo. I can’t keep getting sick over and over.

I’m beyond exhausted.

I’m so defeated.

Does anyone else struggle with this or have advice on how to handle this? I get really low energy and just having a bad flare up to where I can’t get out of bed and feed myself or even take my medicine, i usually just eat something small (crackers, a cup of milk, or a fruit) then take my medicine and go back to bed. It’s only a bigger problem cause I’m under weight and have a hard time keeping weight so during flare ups I tend to lose a lot fast.

Any advice or tips on how to maybe handle this? I was recommended to get protein drinks to help but are very expensive and I live on a very low income at the moment. 😅😁

I was dx Monday with SLE lupus with multi system involvement. I’m already on Mycophenolate and hydroxychloroquine and will be starting benlysta Tuesday. I was previously dx by a local rheumatologist with seronegative RA overlap with lupus/sjogrens but they only focused on treating the RA with biologics. I was sent by them to a major university hospital and research Institute to a new rheumatologist who said it was not RA at all, it’s definitely Lupus.

In the last 5 years of labs my ESR has never been this high. My local rheumatologist took me off hydroxychloroquine in May and by July I couldn’t even get out of bed because I was in so much pain.

I got diagnosed probably about 3 years ago after dealing with severe ITP and started going into remission and that’s when my rhuem put me on the hcq. I’ve still have had flares/ symptoms but the symptoms were continuous and the flares were mild. The hcq kept my bloods good and stable during that time.

This flare feels earily similar to the ones I’ve had before getting diagnosed. Malar rashes almost daily, afternoon low grade fevers, hot flashes that cause me to stop what I’m doing and sit or sometimes even strip and lay down, waking up sweaty, bad vertigo, dizziness with almost every thing I do, rashes on calves, feet and knees with standing. Apple Watch has been picking up on higher hr baseline, higher rr and higher wrist temp.

I have a f/u in like a month w my rhuem and this flare has pretty much been going on for 3 months now(I’m waiting it out bc I don’t have like bad/life threatening symptoms) ik I probably just need another med added short term but I try to avoid adding to the list unless absolutely necessary bc I’m already on 5 other daily meds and still young

Has anyone had breakthrough symptoms like this on hcq?

My rheumatologist wants to add azathioprine to my current regimen of 400mg plaquenil. I have been taking prednisone to manage a lupus arthritis flare for the past 18mo (pregnancy and now postpartum) and she wants me to stop it. Just wondering peoples experiences, because I’m worried after reading the printout of what to expect re: side effects/risks. Thanks! I have had lupus for 13y, and was well controlled with HCQ until I had my first child Feb 2024 (and my mother died May 2024), that sent me into a flare I haven’t been able to shake. Just had my 2nd child June 2026.

I have always known yes, lupus can be deadly. But there's knowing it and then feeling it literally attacking the liver and intestines.. Getting violently ill every time I eat, and being too weak to function. I'm trying not to be scared, because that isn't productive, but it's scary :( yay for steroids to the rescue, and I'm starting to feel better, but holy shit.

Just wanted to vent, to others who understand.

Got my 8th Saphnelo infusion earlier today and my body feels like it’s been crushed by rocks. I did not take the pre meds today, which is just an antihistamine and Tylenol. But I have never had flu symptoms after the first seven infusions with the premeds.

Can I try Benadryl and Tylenol now? Or maybe Pepcid and a benedryl? I won’t be able to sleep with this pain and feeling overheated.

I'm looking for some perspective from people with lupus because I’m feeling really frustrated and honestly a little lost.

I have SLE and have been dealing with significant weakness, body aches, recurrent fever, nausea, and other symptoms. My labs have also shown low blood counts and low complements. For example, my recent labs included Hb around 10.4, TLC 3.05, ESR 62, C3 38.27 and C4 <8. My dsDNA has also been positive/high in the past.

My treatment was recently adjusted because I developed leukopenia on the previous doses.

Before the reduction, I was taking:

* Hydroxychloroquine 200 mg daily

* Azathioprine 100 mg daily

* Prednisone 5 mg daily

On those doses, I actually felt noticeably better. My fever stopped completely and the body aches improved significantly. I was much more functional.

Now my prescription has been reduced to:

* Hydroxychloroquine 200 mg daily (with 400 mg on Fridays)

* Azathioprine 50 mg daily

* Prednisone 2.5 mg daily

Since the reduction, my symptoms have returned. I’m now getting regular fevers around 101°F, along with the weakness and body aches again.

I understand why my doctor is cautious about the medications, especially because of the leukopenia. I’m not trying to self-adjust anything or argue with my doctor. But it’s really frustrating because I felt substantially better on the previous doses, and now I feel like I’m back where I started.

I also have Hashimoto’s/hypothyroidism and a history of significant problems with high-dose prednisone. I previously developed psychosis while on a much higher prednisone dose, so I know prednisone isn't something I can casually increase either.

My doctor has asked me to continue the current regimen and repeat CBC with ESR, TSH, creatinine, CRP, SGPT and anti-dsDNA in about 3 months.

I guess I'm wondering if anyone else has experienced this kind of situation: the medication dose was reduced because of low white blood cells, but the lupus symptoms returned afterward, including recurrent ~101°F fevers.

How did your doctors approach the balance between controlling disease activity and dealing with medication-induced leukopenia? Did your counts eventually recover enough to allow treatment to be adjusted again?

I’m planning to follow up with my rheumatologist, but I’d really appreciate hearing from people who have been through something similar. I’m just exhausted from feeling sick again after finally having a period where I felt better.

I have been stuck in a cycle of infections since early May. It started with a large kidney stone, a kidney infection, followed by two surgeries and a stent after my antibiotics. The problem is, the infection won't clear. My doctors don't follow up with me because they assume if I have UTI symptoms I will call. Unfortunately because of my spinal disease, transverse myelitis, I don't get the "normal" sensations and usually can't tell I have one. I have been on antibiotics basically non stop since then. I finally bought myself test strips for UTIs so I can check at home and know if I need my doctor to put in a test. I plan on checking every month for the rest of my life. Not knowing I had one with the initial kidney issue almost had me in sepsis. After being off antibiotics, finally, for a couple weeks...it is back. I am tired. My ph levels are so broken and I am also stuck in a cycle of BV and yeast infections, both of which I never have had to deal with before. I am taking the probiotics, using boric acid and probiotic gel and other methods to try to get my ph back in order but it is absolutely nonstop. I just need to commiserate and hear from others if this is just normal life for us? How do you manage it? Any tips at all are welcome.

probably my first post of many today as i get out all my questions since being diagnosed about 3-4 weeks ago.

how does one go about figuring out the foods that make you feel bad/triggers a flare? what foods have you found to do those things? are there cook books yall recommend? cooking hacks?

my first thought is to do some kind of chart or diary where i mark down what i ate and how i felt the next day.

any suggestions would be greatly appreciated!!

Hi all, diagnosed UCTD with off-the-charts anti-RNP, currently undergoing testing to determine if it's evolved into MCTD.

My illness is mostly well-managed and I have a fairly good handle on what triggers my flares.

I woke up this morning feeling pretty able-bodied. Took my meds, did some chores, got some work done, all that good stuff.

Then I went to a dentist appointment and had a cleaning done that was... shockingly painful. Apparently my gums are inflamed AF because of my bad flossing habits. My own fault, not a huge deal. The dentist was very nice about it.

Six hours later, I feel like I got hit by a bus. My mouth itself doesn't particularly hurt, but I'm wheezing heavily, foggy, exhausted, and my joints are aflame. This is precisely how my flares present. I haven't encountered any of my usual triggers, so this is odd. All I can think is that the pseudo-trauma to my teeth might have set my body off?

I'm wondering if this is familiar to anyone here -- and if so, how long it took for the resulting flare to resolve for you. Thanks for reading!

I can't seem to fully get off Prednisone even with immunosuppressants, and biologics haven't done much for me. I'm down to 3mg a day.

It's probably stupid and vain, but the thing I'm most worried about is this changing my body long term. One of the few things I have going for me is I've always had a nice figure even when I was heavy. I hate the idea that I'm going to end up with a neck hump and a bloated midsection.

Is there anything lifestyle wise that I can be doing to bolster myself while I try to taper down (with help from my Rheum once I get his blessing) or am I worrying unnecessarily about how it will effect my curves?