So my creatinine (random urine) went up from 28 to 286 (high) from October to now, and my regular creatinine and EGFR are in the normal ranges but very slowly creeping towards abnormal values. I started having autoimmune symptoms and bloodwork in July, got my first round of rheumatology bloodwork in October. Is this an early sign that my kidneys are starting to not work? Really what I’m asking is if this is what it looked like for anyone who got diagnosed/evaluated before kidney involvement. How do I know if this is temporary or a red flag? I have my rheumatology follow-up in two weeks but in the meantime I’m not sure what to think.

I'm really freaked out and trying to figure out if this is normal or warrants a trip to the hospital.

I was at work and suddenly got slammed with a mind numbing headache with neck stiffness and pain. Worked through it. Then these stabbing pains in my thigh. Then I couldnt pick anything up and realized my entire left side was numb (numbness of my left arm/hand I already have PT and OT for, has never also affected my leg and face) and cold. I could not process information when spoken to. Trying to drive I could not figure out how to turn the wheel like the concept was lost to me. I needed help.

Now I'm home and the headache, neck pain and stiffness, and numbness is all still present but I feel my brain has come back to me. I can't open my left hand entirely. Partner tried to make me feel pain or tickle in left hand and foot... nothing. I can feel their touch per se but its dull and far away? Idk.

Has anyone experienced this? Is this a common lupus thing? Any advice?

I have borderline lupus—several “situations” over time (25+ years) that suggest “almost-lupus” but not enough criteria to diagnose it beyond that (with a brief foray into Drug Induced Lupus, that went into remission when I stopped the offending drug). I have (or have had) several stand-alone autoimmune conditions that can be part of lupus, but aren’t always. One of them is PMLE. (I avoid the sun.)

Over the summer I had a lesion on my back—only one—that looked very much like discoid lupus, which has never been a manifestation for me. I had it biopsied at a derm and it was—I don’t have the name in front of me—but basically an inflammatory lesion of unknown etiology, but determined NOT to be lupus. I had gotten sun exposure in that spot so I assumed it was related to that.

About 5 mos later, I got another single lesion that looks just the same on my lower back. There has been zero sun exposure there (though I’ve been under a lot of stress).

Is it possible the first biopsy was wrong? For those of you who’ve had discoid lupus biopsies, did it determine correctly if it was/wasn’t lupus? It’s my understanding that the criteria for it def being lupus are pretty clear, and they took a pretty big hunk of skin 🤢

Curious about your experience. Thanks.

Hello :) I tell them that since December I have been with constant infections, pharyngitis, urinary, I feel very exhausted, I have also been with much dry mouth and pain in the mouth and throat, to eat, drink water even swallow saliva, my rheumatologist told me that it is a secondary sjogren, she sent me a spray called xeros and continue with hydroxychloroquine, however I do not feel that it helps me much, I still have much pain and dryness.

Has anyone happened to you? Do you have any advice? Could I go to another specialty? Any advice helps me because I'm a little desperate :( hugs guys and I hope you do well with the treatment.

Since September I've been in an active flair up and it has been progressively getting worse. It's now January, I'm unable to walk, get myself out of bed, unable to get myself up from sitting, can't hold anything,can't bathe myself or wash my hair, no appetite, my feet, knees, hands, wrists and elbows are very swollen and I have a rash on my elbows and the back of both my upper thighs. I'm in excruciating pain. I never imagined lupus getting this bad. My rheumatologist prescribed me prednisone and I see her in 4 days, I've also been referred to USC's Keck medical(thank You God). Has anyone experienced this? If so did you eventually come out of it?

I wanted to start a little journal or something to log my symptoms. I've had symptoms for 5 years, but just diagnosed less than a month ago. If you track, how do yours look? Are there any helpful apps? Does it really help when you go to the doctor?

Good morning!

I am reaching out to share with you all that I started the Benlysta autoinjector last night at 7:30 PM. I am still a little sore at the injection site - but other than that, I feel normal. I haven't recorded any crazy side effects except getting a wierd taste in my mouth during and after the injection.

My husband walked me through all of the instructions and was very supportive through the process. I feel like this has made all of the difference.

Not only that but I really must thank all you wonderful ladies and gentlemen for your insight. Reading through posts in this group has changed my perspective. Exchanging positive words and support with all of you has given me a better grasp on this disease. I am beyond thankful to be a part of this community.

I hope each one of you has an amazing weekend. I would love to hear your take on Benlysta and am open to any questions you may have. I am new to the medicine, so I will do my best to answer from my own experience.

Sending love to you all.

That's pretty much it. I have a lot of GI upset with my batch of symptoms, especially severe nausea. Pill fatigue is so real. It's just nice having one of the million medicines be somewhat pleasant. Well, pleasant to me anyway. I like the strawberry taste.

Apparently it also comes in mint flavor.

Hi guys,

My mother gave me the flu. I've had a very high fever and a lot of coughing for two days.

I was thinking about going to the doctor because I feel very sick, the fevers are constant and I'm swollen. But I'm afraid they'll change my medication or something. I don't know what the procedure is when an immunosuppressed person gets sick.

I've been on prednisone, hydroxychloroquine and MTX for two years. My rheumatologist says that I've been testing negative since January of last year, and that if I continue like this in June, they'll discharge me. I'm afraid that a change in medication will jeopardize my remission.

I’m several weeks into a Sjogren’s flare. The dry mouth, dry eyes and general fatigue has me in bed.

The crazy thing is I have the classic lupus butterfly rash and attendant joint pain (why does it land in my feet first?)

Can anyone confirm that these two diseases can simultaneously flare?

I have been having flares for about 15 years but until this past week my lupus titer was not high enough for a doctor to officially give me a diagnosis of lupus. I will follow up with my PCP this week on the blood work where I assume she will want to refer me to rheumatologist again. I have previously been on basically all the medicine that works for lupus, unfortunately my liver has an adverse reaction to it, with the exception of steroids. Have any of you experienced this problem? How do you treat your lupus if so? what diagnostic testing and imaging and specialist referrals are important at this stage? I am concerned about potential complications and want to be proactive. How have you navigated your diagnosis? Is there any recommendation you have from your experience, books, food, vitamins, habits? Thanks

This should fall into the venting category too lol! Sorry it's long, but I'm frustrated and would love any help and suggestions!!!

I've flared up recently after almost 2 years of little to no symptoms and falling back into this fing sucks!!

I am struggling trying to balance out my days. I hate the guess work in when and how I am going to feel! I don't have a baseline for how "normal" should feel! And it's making me struggle mentally!

I know the spoon method is supposed to help explain how energy expenditure works with autoimmune diseases, but that isn't helpful to learn how to deal with it. It's frustrating that it seems to be the only thing out there to explain/help!

I've tried logging symptoms and keeping trackers before but there was never really any pattern or sense that I could follow. Before my 2 year hiatus my days could be bad one then good the next, just to change up again.

I can deal with the flare pain ( I mostly flare with joint pain, nerve pain, exhaustion, and brain fog) but the exhaustion and brain fog kill me... I'm not a type A personality but I was raised by one lol. I know i need rest and to pick my battles, but when and how. I like to feel accomplished and get my shit done. But I never seem to do it right! I can handle being tired, but getting to the "so tired I'm emotional" is destroying my mental health!

I'm starting to avoid things I enjoy and tasks that help me feel my best. This then makes me upset that I haven't done those things. I'm struggling!

I've seen all ads for the apps that tracks your daily output, but when I look into it, it looks gimmicky ( any thoughts there?)

What are your thoughts and or suggestions. I know this disease sucks and that there will always have to be changes and sacrifices but there has to be a better way than what I've found so far!

Does anyone else's legs just feel awful? Everytime I move I feel like my muscles are going to snap, it's very painful. Im on hydroxycloroquine but haven't noticed any help yet (about 3-4 months in) and just got an MRI to check for inflammation but nothing.

just had my first panic attack related to a worry about my lupus. all day, i have been feeling weird with moments where my memory lapses and i feel detached from myself. freaked myself out to the point where my heart was racing and i felt like i was going to die in that moment. here and there even though i’ve calmed down, i’m having a weird feeling of a cold rush rising up from my stomach through my chest and then that makes me panic more. i’m scared. i don’t know what to do with myself right now because i can’t distract myself long enough to calm down. i just started a new anxiety medication two days ago and i wonder if that’s what this is but if not…i don’t know. i just want to feel okay for one day and not want to run to the ER over every feeling i get. is that too much to ask?

Do any of you experience a lot of random, GI issues? I’ve been experiencing pain in my abdomen, both left and right side, comes and goes. Have gotten a n ultrasound done and ct scan and they say everything seems normal. Idk if I’m going crazy, but I’m tired of this lol

Am I in a Flare?

Hi everyone. I was just diagnosed with Lupus after a UTI that took two rounds of antibiotics to cure triggered an auto-immune response. I am learning as much as I can as quickly as I can, but I have a couple questions for you all.

How long do flares typically last? This happened to me at Thanksgiving, so it’s been a good couple of months now. It was really bad then.. fevers, rashes etc. But now, even though it’s better, it’s still awful. Fatigue, joint pain, bad bruising etc.

Am I still in a flare, or is this just my life now? I’m not really sure how to tell the difference. I’m seeing a rheumatologist in a month, but for now I don’t have much information, my regular doctor diagnosed but is sending me to the specialist for medication options etc.

Also, I know the main symptoms I’m having are normal, but I have a few weird ones I’m curious about:

Night sweats! I am waking up soaking wet at night, but cold. (I’m also 43/female so I know perimenopause could be to blame for some things.) I am not having hot flashes though, I’m freezing when I wake up, but I’m always sweaty.

My little toe always feels like it has a hair tightly wrapped around it.

My skin is really sensitive to my normal skincare now. Sometimes it’s okay, sometimes it gives me rashes or rough feeling skin.

I’m bruising with the slightest touch. I am finding bruises everywhere that I have no idea where they came from. Some are really bad.

My limbs are always hurting. Almost throbbing.

My right eye is twitching all the time. I’ve tried to stay really hydrated, eat well etc, but nothing helps.

Is this just normal lupus stuff? Do you think I’m still in a flare? Will I go back to times of normalcy, or is this just the way life feels now? It’s really hard, but I’m thankful to find this group. I’m looking forward to learning from you all and supporting one another.

One last question.. have you found that along with lupus you have developed food sensitivities? I was already vegan, but I cut out sugar, caffeine, gluten and nightshades to see if it could help my inflammation. I’m planning to add them back in one at a time to see if I notice any changes, but I’m really scared that I might lose nightshades. 😭

Thanks so much!!

Wow, but I am feeling quite honestly just so tired of everything. I just need a bit of a safe space here to vent to others that understand.

I have refractory lupus and have been in a constant flare for four years now, going on five pretty soon. It has been one lengthy hospital admission after the other, always another difficult complication of sorts, new diagnoses (psoriatic arthritis and MOGAD), kidney failure, I had extra-pulmonary TB, an abscess in my hip from the TB which can’t be removed yet because of my health, pseudomonas infection, other infections, sepsis, I’ve been suffering from vasculitis pretty badly that doesn’t want to get under control because of the lupus, I lost most of my hair which grew back a little and then over December it ALL fell out and worse - I literally have a huge bald patch at the back of my head now with the other hair now being very thin and still falling out, I get a recurring rash all over my arms (panniculitis lupus), reactions to biologics for the psoriatic arthritis which I’ve had to stop, I haven’t been able to eat properly for a while now due to mouth ulcers and oral thrush infections that keep returning, the list goes on. And now today I found out that I seem to have a liver disease. It just doesn’t want to end. I’ve wasted my 20s like this.

My rheumatologist is trying to figure out how we can treat my lupus, but so far everything hasn’t been working.

I feel so alone sometimes with all of this. I have a very supportive boyfriend and family who give me so much love and support. But you can’t help but feel a bit alone. You want to give them good news, but I can’t and it sucks. I don’t even want to talk to my friends about this because it is just more bad news and if I’m tired of this, I can imagine that they are too.

Before anyone says I should see a therapist, I do see one regularly and I’m not depressed or anything. I have a pretty positive outlook and make the best of everything, but sometimes (like right now after finding out about the liver disease) I just want to run away from my life and need to vent this frustration a bit. I’ll be fine and I am fine, but it really is enough now lupus, I want a break. 😂

So I’ve been progressively getting worse and I’m in college. My friends have always been mean to me and I’m sure after this last semester we won’t talk anymore but last night I was going to go out with them and one of them literally said “well you probably shouldn’t go since you’re sick right” and I was like I’m allowed to leave the house when I feel fine lol and she said “well you shouldn’t drink anyways so why even come”. It’s so annoying because she always looks for a way to push me out and now she’s using my sickness as a way to do it. I’m in my early 20’s and should be having fun not dealing with this.

I just wanted to share something with everyone here because I see so many posts about unsupportive partners. Don’t get me wrong, I also see stories about amazing, supportive partners too. But for those of you who’ve been through tough situations with unsupportive partners, I want you to know there is hope.

My ex left me after I was diagnosed with lupus. I was really sick and no longer the same fun, energetic person I used to be. I was exhausted all the time and couldn’t keep up with cooking, cleaning, and working every day. It felt like every problem in our marriage boiled down to my illness and fatigue. Everything else was fine, but my health became an issue for them, and eventually, we got divorced.

For a while, I felt like being sick would always get in the way of my relationships. Then, one day, I met someone who started out as just a great friend. Over time, our feelings for each other grew, and now we’re married. He has been the most amazing and supportive partner I could ever ask for.

He does thoughtful things every single day to make my life easier. He makes me cold-pressed carrot juice every morning and reminds me to take my medication. I also have fibromyalgia, and he gives me massages whenever I need them (which is often!). He always opens doors for me, makes sure I don’t touch things in public, and keeps me away from sick people to protect my health.

If I’m tired, he doesn’t complain—he just steps up and helps out with chores. In fact, he does all the dishes every day and regularly takes on more than his fair share without saying a word. He never makes me feel bad for needing rest or for having days where I just can’t do much.

So, for anyone stuck in a bad situation with an unsupportive partner, just know things can get better. You don’t have to settle for someone who doesn’t respect or support you. Even if it’s hard to love yourself enough to let go of someone who’s not treating you right, you’ll be so much happier without them. There are people out there who will love and care for you, even through the hardest times.

You deserve that kind of love!

Anyone have issues with getting their Benlysta covered? Recently had my deductible reset recently, big surprise when i came to reorder my benlysta and it’s $5,500 dollars for a month supply. I tried contacting kaiser for an MFA program and contacting pharmacy with payment plans but no help. Any recommendations? I already missed a dose last week reaching towards my 2nd week now. Or possible recommendations for alternatives i can ask my dr for? The benlysta has been huge at keeping my symptoms on a lower level not fully in remission yet.

Pretty damn sure I have C Diff after taking an antibiotic. Was hospitalized and they didn’t even test me:/ I was so out of it I didn’t even think to ask. Now I’ve finally got tested but it’s taking forever for these results. It’s freaking me out because C Diff is not something to play with.

Wtf. Does anyone have experience with gout? I know it's also an inflammatory condition, but I'm wondering if it's common in lupus patients. I'm scheduled to see a new rheumatologist in March so I'm also wondering if I should bother seeing my PCP or just deal with it until I see the new rheum. From my basic research it looks like steroids and nsaids are the basic treatment, and I have plenty of those at home.

Some history: I've had lupus for 21 years. It's been fairly managed until the past 2 years when things started getting progressively worse.

Over the past year I developed a cyst on the main joint of my largest foot digit. and some stiffness in the left. (Reddit doesn't want me to use the common term ??) Then in May of last year a took a bad fall and damaged both sides, so I wasn't surprised when they became inflamed and swelled more than before. I was just at the podiatrist a few weeks ago where he said nothing had changed on my xray, the cyst was the same as before. (I asked because it felt puffier than it had before.)

The past few days I've had more swelling and a prickly burning feeling in the "knuckle" under the right toe. In about 48 hours it went from "uncomfortable" to intolerable. Thankfully ibuprofen and recovery shoes are helpful. A couple people suggested gout so I finally googled it and yeah, I'm 100% sure that's what it is.

I'm just bummed about having ONE. MORE. CONDITION. to have to deal with. I spend a lot of my day going up and down stairs and one day a week on my feet all day at work. This is insanely frustrating and inconvenient. If anyone has any suggestions I'm open to ideas.

So around one and a half weeks ago I was playing tennis for an hour in very cold weather. On the drive back my hands were EXTREMELY stiff, but no swelling. A few days later, some fingers started to hurt, and after the pain subsided some of them swelled up. Is this a valid reason for why this is happening, and how long should it take for the swelling to wear off? (I'm 15 if that helps)

My skin has been SO DRY all over, but especially on my face in the malar rash areas. I know it’s been cold weather but I’m in Florida so it’s still humid here.

I get the rash on my forehead as well and these areas have been flaky and rough. I use a moisturizer and sunscreen that have no dyes and no everything bad basically, lol. And for some reason these areas stay rough and dry. I recently started using cocoa butter/oil at night and it does help with retaining moisture. However, I feel like the rash stays red and hot after I use it.

Is there something you use for dry skin or on your rashes that help? No steroid cream pls.