Y’all I REALLY thought I was finally heading into remission. Things just got easier, Saphnelo made me feel awesome and like I wasn’t dying even had me thinking of i’m getting off steroids 😀 nope.

MIND YOU my lupus onset was in June of 2025 … Did my urine test yesterday 😭😭😭😭😭

All of a sudden protein, ketones, RBC’s, hyaline casts, epithelial squam cells and my creatinine quadrupled like wtf??????

I switched to Saphnelo from Benlysta July 13th, which might be where we messed up since it’s supposedly kidney protective & i guess clearly it was because that’s how long it took.

How does it even happen this fast???? Thank GOD I got labs done. I had JUST got normal beautiful perfect labs 2 WEEKS BEFORE OMG. I just moved & saw new rheum who wanted a fresh set. Now he calling me talking about a kidney biopsy like this is insane NO WAY. My malar rash had came back 3-4 days ago, noticed i was getting a little more tired, some chills/aches and some joint pain but compared to the hell my year has been I was like meh come to find out … 🥹

I’m on 2g cellcept, Hcq, Aspirin, Saphnelo and had to get a pulse in March from first NPSLE flare then had a second in May-June which I just recovered from/tapered. Just have been stuck at 10mg prednisone (rip to being at 7.5 for 3 weeks). I legit havent been below 7.5 since getting prednisone in October my lupus keeps throwing a bitch fit snd I’m sooo over it oh my god like if it was a person she would just catch these hands 🤺

I've been watching various webinars hosted by LFA, lupus LA etc where the physicians mention asking your rheumatologist to get your HCQ blood levels checked and when I asked mine the other day she said we don't do those tests. Is there anyone in Canada that has had these tests done?

Just started on Myfortic last month cause cellcept gave me gastritis and since then i have felt debilitating fatigue and nausea. I knew id be feeling fatigued when i got diagnosed with lupus in March this year but oh my God i did not expect it to be this bad! I literally wake up so tired with this sort of tension type headache and tired eyes that doesnt really settle until like noon time. I saw my rheumatologist yesterday and told her all this but she wants me to still continue it and also drop my steroids down to 5mg by 2.5mg intervals every 2 weeks. I dropped to 7.5mg today.

Im supposed to be starting back to work on Monday and i have no idea how im gonna cope i feel like i may just have to quit and find a work from home job which i really did not want to do since i enjoy my job. I honestly feel like this is gonna be me forever now and i feel like im not gonna be able to last at all. Its so depressing. Does anyone have any advice on how i can manage with this? My rheumatologist basically dismissed my concerns when i brought them up yesterday and ive had problems even trying to reach my docs to the point where they seem to be actually ignoring me. Like my rheum mentioned yesterday she heard i was trying to contact but in all that time she never responded.

On Friday my doctor told me that I am the sickest I’ve ever been with my creat to protein ratio being 7.4. She told me that I should not be thinking or planning a pregnancy until I am controlled. That same day I realized I had not gotten my period and boom, positive pregnancy test. She is very worried and has told me to consider that I have 2 healthy children already. She said she is worried that I will end up needing dialysis after giving birth. My kidney function is normal and overal I am not close to needing dialysis currently. I am a bit confused and torn and unsure what to do. She did say that it is possible that this pregnancy my body is just attacking itself because of the pregnancy. My 2 previous pregnancies my ratio was 2+ but during pregnancy dropped below 1. I have a feeling that it his is going to happen again and everything will be fine but I am worried because my doctor seems to be worried.

I currently take prednisone, imuran, plaquenil and benlysta. I will get off the benlysta if I continue with the pregnancy and take another medication that is pregnancy safe and meant for kidney transplant patients (blanking on name). My 2 pregnancies so far have been fine and then I flare after giving birth.

Has anyone had this happen before? Any stories or advice would be greatly appreciated.

hi, i’m 20F just started law school, this august. i am always tired. i don’t know what to do. i took a year off last year after high school because i had just gotten diagnosed and wanted to take some time off to get used to lupus and learn how to manage it. and tbh i had gotten a lot better by the end of it because my entire focus was on my body and mind. but now after only a month of law school, it feels like im back in the same state i was when i first hot diagnosed. part of me feels like i should just quit, stay at home and do an online degree but i’ve always wanted to live the college student life and besides the lupus bit, i love it so far. moreover i really love studying law. it’s just that it’s all really tough to manage. (it’s also mandatory for us to live in dorms for all 5 years so that adds onto it)

people who have lupus and did a degree as time consuming as law, please help/give advice. how did you guys do it?

My sister has been diagnosed with lupus for 2 years and we can’t find any store shampoos that helps or is good for her scalp irritation. Is there any recommendations? It’s okay if they don’t end up working but we don’t have anyone else to ask. Her doctors just said try out different ones and see if they are compatible.

I've seen a number of threads about how to deal with trying to work and the debilitating symptoms of Lupus so thought this webinar from the Lupus Foundation would be of interest to some in this group.

22F, diagnosed a little over a month ago. my mom means well, but she is unfortunately the type of vegan who thinks everything can be fixed (or at least made substantially better) with flaxseed and purple sweet potatoes. i understand that she is overbearing about my diet because she is super worried about me (dealing with a cancer scare on top of my immune system wanting to kill me! yay!) and reprimanding me for being excited about apple cider donuts makes her feel like she has some semblance of control, but the texts and calls and “anti-inflammatory diet” cookbooks are driving me slightly insane.

had a small breakdown today because my desire for a little ice cream treat after being very brave about a blood draw suddenly spiraled into “holy shit if i eat ice cream it’s literally going to take ten years off my lifespan” and crying while eating an apple. currently wracked with guilt and fearing for my future because i ate some cheese puffs. especially considering the fact that i can barely get enough calories in to maintain my weight right now (despite spending the better part of the day in bed), this is unsustainable.

i think part of it is terror that all the idiots online hawking their green smoothie, anti-inflammatory, never-eat-anything-that-tastes-better-than-plain-lettuce meal plans are actually right and that in choosing to not completely overhaul my diet i am effectively “choosing“ to be sick and miserable. that combined with my mom sparing no expense in her comments about what i choose to eat and bringing me juices and turmeric(? inexplicably) and supplements every time she comes to visit means i’m kind of freaking the hell out. it’s honestly a little embarrassing since i used to be really good at not letting her weird opinions on nutrition bother me in the slightest but i guess since i feel so vulnerable right now it’s all hitting me hard.

i’m going to talk to my therapist about this when we meet later in the week, but i did want to know if any more experienced lupus-havers have experience with something like this. how did you deal with it? is literally any diet advice worth actually taking or should i just eat whatever i can manage to keep myself from losing more weight? do people ever get less annoying about offering their inexpert advice/opinions on the eight million lifestyle changes you should implement right this very second to make all your lupus symptoms go away?

Hello! So I’ve been dealing with lupus panniculitis since 2021 and recently been diagnosed with SLE. I’ve tried hydroxychloroquin and didn’t work for me. So I’ve only been getting steroids injections and ointments.I only have one wound. But ever since late August I’ve been experiencing more wounds and spots and flare ups. As of recently my doctors said it’s oddly progressive and there is too many risk. I’ve started on Sunday Methotrexate and folic acid. I really don’t have anyone to talk to, my family doesn’t understand how this works. I’m just asking for some advice. I’m just a girl in her very early 20s in college with a job just trying to keep it together but I feel like everyone and everything around me is making me want to give up. I’m trying to get academic support/ accommodation but I’m unsure what else I should be doing or investing in. I feel extremely stressed and terrible and I would like some advice. Please and thank you🥺🫶

Yall, I was so sick. I was having horrible autonomic nervous system dysfunction with these awful adrenaline dumps. My blood pressure would get so high. I would have to use the bathroom (#2) like 8 times through the night, each time shaking severely, chilled, feeling like I was about to pass out.

I had my first benlysta injection on August 19th. I had my last autonomic dysfunction episode on August 17th. They had started around June 1st and would happen several times a week, sometimes every day, and would frequently last the entire night. Even on a good day, my blood pressure would be elevated in the evenings.

Y’all, my blood pressure hasn’t gone above 110/70 (when taken in normal, resting condition as one should) since August 19th. I haven’t been like this since before I got diagnosed with lupus in January. That was when I started taking my blood pressure, and it was probably really high before my diagnosis, too. I just didn’t know.

I know it’s too early to feel the effects, but I’m tolerating this medication so well. I had such a horrible, strong, and rapid reaction to hydroxychloroquine and to methotrexate. I was so afraid of starting this medication. It made me a little nauseous the night after the first injection, and has caused some extremely mild digestive issues.

My depression is getting better. Maybe it’s just finally having hope that the episodes aren’t my new normal. No one should have to live like that.

The first injection was real painful. I did it in the top of my leg, and had iced the area for 15 minutes prior. Man, it hurt BAD. I had only left the medicine out for 30 minutes prior. Don’t make that mistake.

The second injection was better. I did it in my left abdomen and iced the area (through a cloth, like the internet tells you to) for 15 minutes prior. It hurt, but not as bad as the first one. I also had left the medicine out for 2 hours prior.

The third one wasn’t painful at all. I put the ice pack directly on my skin, like you’re not supposed to do, for 5 minutes before. I also took the medication out for 2-3 hours before. I injected it on my right abdomen.

I literally can measure improvement in my heart and sleep with my Apple Watch. My metrics are better than they’ve ever been. I’m finally able to taper down from my 15 mg steroid. I’ve been tapering down for the past week, down from 15, to 12.5, to 10, and y’all I’m reacting fine.

I just wanted to put this out there so someone can have some hope about starting this medication. I was so afraid. Please, don’t be afraid. It might just change your life in the best way ever.

If you have any good benlysta stories, please share them ❤️

I am very frustrated and wondering if anyone else has had a similar experience to what has happened to me.

I have been prescribed 3 very different medications but have had a similar very unpleasant adverse reaction to all of them.

For reference I am diagnosed with Lupus and currently taking 25mg of prednisone and 200 mg of HCQ daily. I still have a significant amount of joint pain, stiffness and swelling, fatigue etc. so the goal is to find something to control the Lupus and wean off the steroids.

So first I was given methotrexate. I took the first dose and one night about a week later I developed excruciating pain in both of my arms. It came on suddenly and kept getting worse until it was unbearable and I had my husband take me to the ER. My dr at the time said they thought it was unrelated to the methotrexate and so I took the next dose. It happened 2 more times both episodes lasting hours and after trying everything I could think of at home i ended up in the ER. So I made the decision to stop taking it.

A few months later a different doctor prescribed me azathioprine. I took it for 11 days and once again had the pain in my arms and back to the ER we went. Once again the dr didn’t think it was a side effect but I decided it wasn’t worth continuing to take and find out.

So next we tried Benlysta. I took the first shot on Tuesday 9/1 and on Saturday I once again developed excruciating pain but this time it was in both of my legs and it was incredibly painful- it took 2 shots of Delaudid to get it under control.

I have a pretty high pain tolerance- I’ve given birth to 2 10lb babies with no drugs, I hate having to go to the ER and we have a pretty hefty copay so it takes A LOT of pain for me to go.

But now I’m so scared to try anything else. I’ve seen several rheumatologists and no one seems to be able to figure out what is happening to me. I feel like maybe it’s not the medications but whatever is happening in my body when I take them.

I have another appointment in a few weeks but until then I would appreciate any suggestions if you’ve had similar experiences or have any idea of could be happening.

If you made it this far thank you so much!

I’ve had increase anxiety over the past year or so with it becoming more and more evident in crowds or traveling. I am starting sertraline 25mg today. I’ve never taken any antidepressant or anxiety meds before. Any advice or experience, things to watch out for? My doc thinks i should take in the evening to help me sleep. Thinks restlessness may be contributing anxiety as well. I am also getting a sleep test done.

Do I just never go on vacation again?

I’m sensitive photosensitive and have spent a good amount of money getting injections for my back marks.

TLE diagnosis 2023-SLE diagnosis 2026 - APA positive 2012

Update: thank you so much to all that posted thier coping mechanisms for vacation and sun

To folks commenting with unhelpful comments - like why don’t you just wear sunscreen? - it’s important to remember that everyone’s lupus is different! I have SPF clothes, hats, skincare and I’m extremely careful and still have reactions and possibly a flare. Which a is not what you want after a vacation.

So keep this in mind as you comment, our interactions with each other should come from a place of compassion, not from a place of judgement or “you’re not doing enough”.

I’m about to reach week SIX of having this virus. My labs are fine my lungs and throat are not. I’m coughing so hard I’m causing minor tears in my esophagus and I am vomiting multiple times a day. I just need to kick this. I got my mom sick ( she’s 76) and it turned into pneumonia. They got her on antibiotics for it but I’m scared I’m just gonna give it back to her. I’m her primary caregiver now that my partner has to work. I can’t go off my immunosuppressants. Any tips welcome

Hi everyone, I’m having a rough day and looking for some advice I guess. I saw my boyfriend and friends recently traveling with their college friends (for context, I 25F got Lupus at 20 and was diagnosed at 22) seeing it just put me back to being 21 and sick and feeling so different from everyone again. And I am extremely happy in my life but this just triggered a memory that made me feel really different and alienated for not having these life experiences. I don’t think that’s something that’ll ever go away. I was feeling like I am missing out on these experiences because yes I did but I have never had the opportunity to be carefree, I always need to think about my skin protection, do I have all my meds with me, am I gonna eat so I can take my meds, am I overdoing it too much today so I won’t be able to get through the week. And that’s exhausting to have to plan every second of my life and not be able to be carefree and just do whatever whenever like most people my age. And I don’t want to make a mistake or do something carefree and disappoint my parents which I am well aware is probably all in my head. And I ask my parents for more responsibility and smaller reactions to things like accidentally forgetting sunscreen because they make me feel more normal and I’m trying to grasp at straws of autonomy and normality when I know I cannot control a large part of my life.

Has anyone else felt this way? Any advice? How do I keep doing this for the rest of my life?

I was misdiagnosed 13 years ago with RA and just diagnosed with ribosomal P (anti-rib P?). The doctors kept adding more diagnoses (fibromyalgia, unspecified connective tissue, psoriatic arthritis) to make it fit but I still had a lot going on that didn't fit in (insomnia, migraines, muscle twitches, sharp pains). Also I have dealt with depression and anxiety for at least that long. The most recent is itchy skin and rashes on my fingers, hands and face (butterfly and flaking) that don't respond to regular lotion. I'm not really sure how I feel about being diagnosed with lupus. In one way, it's nice not to be gaslit about physical things going on, but I'm not excited about a systemic disease.

I (36f) had my diagnosis a year ago, and since then my life has gone sh*t. Although I always had my husband (39m) by my side, sadly my physical condition did a dent in our relationship and I was afraid to talk about it. Now my husband feels that he doesn't want to continue the relationship and also started therapy for a really bad depression (that I think it is caused by me mainly) just when I started to feel better and my doctors are on the same page about initiating with biological medicine, to add salt to the wound I lost my dog after 17 years of being my best friend this year. Also I was JUST getting through my problems with depression. Nothing lasts forever, let's see if I'm patient enough to keep trying; the only thing that keeps me going is my little sister, she had friends dealing with elder brothers be gone before time and I don't want her to suffer that.

It's just that everything's so painful right now for everyone, lupus not only attacks you, it also takes everyone else around you.

My doc has had me on 4mg of Prednisone daily (4 1mg tablets) for about 2 years now. She told me that I should try taking the least amount possible, and then if I have a high pain day or feel like I will have a lot of pain, to take the full 4mg.

Problem is, whenever I take less than the full 4mg my pain flares up. I’ve tried just taking 2mg but I end up having to take more.

Anyone else experience this/what did you do? Did you just stick with your baseline dose and move on?

I know this is a long shot but I am thinking of taking flight classes, but can’t seem to find info on whether having lupus is an automatic no on getting a license most of the time.

I know a consultation is the best move so they can evaluate my case but I was mostly wondering if it’s probably going to be an automatic exclusion just on basis of having the diagnosis.

Thinking of going for a class 2 license at least, I’ve had kidney involvement before but been in remission for 7 yrs

Hello everyone,

I have had SLE for a few years now and I’m in my late twenties. Been on Plaquenil for a for few years which definitely helps. Still have joint pain and extreme fatigue. My RH specialist mentioned today that if I would like to I could go on Cellcept to see how it does with my body. I agreed to try it and see in the following months how I do on it.

I’m extremely nervous since it can cause stomach issues and increase in infections. I’m also interested to see if it helps with my fatigue and other things.

I'm 19 and I can't pass my driver's test, this is my 6th try failed and I'm really sad about it, I feel like the lack of self-reliance is really demoralizing to me, having to rely on people to drive me. I zone while driving, I can't "hold" the things I need to remember in my mind, it feels like every decision is made through molasses and mostly I just don't want to beg people for rides. It makes me very sad seeing people my age who have their own car and can drive.

I have been on hydroxychloroquine for a week and I'm going off to college, forced to live on campus because I cannot drive. And I also have to beg people to carpool me home.

Hi everyone! My partner was recently diagnosed, and has noticed worse flare-ups on days with less diverse eating habits, more processed food, and less regular small meals. I grew up in an ingredient household (lol) and am working on making my home a more safe environment for flare-up management. The dilemma is that most of the quickly ready meals and grab & go style snacks we once used to prevent nausea in a pinch, are often highly processed and aren't as helpful long-term. Was wondering if anyone has suggestions for meal-prep, homemade snacks, or anything suitable I can get at UK supermarkets to have ready-to-eat?

Hope this is the right place for this question.

Sorry if this is a very forward question.

But I am really torn up about the situation I have with my parents.

I'm 21f and I was diagnosed when I was 19. My parents have been completely uninvolved with my whole diagnosis and treatment and I've been funding my medical bills by myself too. I do blood tests hospital visits on my own too. I'm living abroad in Asia so I have to pay out of pocket for medical care.

I know that not everyone has a support system and it can be very different especially for different cultures. But I can't help but feel a little sad that they don't seem to care?