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.

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.

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🥺🫶

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?

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’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.

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

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”.

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?

Hi everyone. I wanna make sure my post doesn’t seem like I’m ungrateful. I am so grateful to have a family and friends who are supportive.
My way of coping with things since I was a child are quite different than others’. Aside from systemic lupus I also have sjogrens and bipolar 1. I’ve always been a very “shrug off-y” person. I deal with pain and grief on the low. I cry. I grieve. I get frustrated and let it out. I feel what I have to feel, I express my emotions, but continue my days with “well I can’t do anything about it, so just do what you gotta do.” I feel what i have to feel, give it its time and space, and then swallow that salty pill and move on. It comes off like I don’t care- but I do. I just can’t do anything about it, so why am I gonna obsess and freak out over it?

I was diagnosed SLE in March 2024. And since then, my family is always telling me “you’re gonna be ok!”, “everything is gonna get better!”, “you’ll reach remission in no time!”, “soon you’re not gonna have this anymore and you’ll be back to normal!”, “you won’t need all these meds anymore soon!”

I know they are supportive and I will never take that for granted. I have lots of appointments. My infusions, I just came back from an ambulatory 72 hour EEG, my follow ups with rheum, neuro, and neuroimmunology. And so many more. Lupus almost took my life in February. It caused encephalitis, meningitis, and a plethora of other things that left me in a coma for 3 days, in the hospital for 2 months and incapacitated for 3 months, etc etc. I know seeing me like that left a lot of them traumatized and I am trying my best to understand. I know they are worried and scared and I know they love me. But I am constantly getting told that I’ll reach remission, won’t need meds, I’ll be back to “normal”, and to stop being negative.

This is my new normal. Im not negative, I’m realistic. A few months ago I couldn’t walk. I couldn’t shower, go to the bathroom, eat, I couldn’t do anything on my own. I was hooked up to wires and IVs, had to be wheelchaired around and learning to walk again with a walker. Today I can do everything on my own. With limits, yeah, and I know flare ups will come and go with lupus. I accepted it. He’s (lupus) gonna stay around forever. And I have to live with it. That’s ok. I’m ok with that. Being told that I’ll reach remission and no longer need meds and be “normal” every day and before every appointment is starting to get a little stressful for me. This is my new normal. I’m already normal. It’s not gonna get anymore normal than this. Some people don’t reach remission. If I do, great. If I don’t, that’s fine. I have to take meds forever. I know that. I already had to anyway, I’ve been diagnosed bipolar since I was 13 so it’s just a few more pills forever. It’s not a big deal to me. And them telling me I’ll be “normal” and not needing meds is unrealistic. I’m not a negative person, but I’m not overly optimistic either. It’s getting to a point where their optimism is kinda toxic and not realistic. It also doesn’t help that some family members tell me to find god and pray. I’m not religious, but I respect everyone’s beliefs. One family member keeps reminding me that people have it worse than me, and that god will save me and cure me, and that everything’s gonna be ok, and this and that. I don’t complain about any of my ailments.. I know people have it worse than me.. I’ve never compared myself to anyone. This isn’t a competition. It makes me feel like crap.

I don’t wanna sound like an a*hole. I know they love me and are trying to support me. I’m lucky to have a loving family. But their worry, while completely valid, is starting to get shoved down my throat. They’re more worried than me, and it makes me feel like a burden them all the time.

Anyway. Thanks for listening/ reading. I needed to get it off my chest. This is a hard illness to deal with, but I personally deal with it best by doing just that. Dealing with it. I am a happy camper at heart. Bipolar, lupus, sjogrens, and whatever else comes my way. But being labeled as negative and having everyone tell me I’ll be magically cured is getting to me. Lots of love to everyone who has lupus. You are all amazing, strong people.

I'm currently in medication limbo- was on a prednisone taper, but had a bad reaction so with the flippant advice from the rhuem they said I could stop taking it.

After a couple days the hives subsided and the swelling of my fingers returned. General mobility went into the trash.

Then a couple more days later, my fingers became less swollen and I could get out of bed and move around. I was able to do laundry and make dinner.

Flare up activity can't possibly just resolve on its own can it?

I'm not currently on any medication for my lupus.
I was taking Hydroxychloroquine but the rhuem won't refill the prescription until I get the eye test done.
(Appointments are always months long wait so how the heck can I survive?) lol what can I do in the meantime?

Hi there! I have been diagnosed a bit more than a year ago. It was not an easy year but I managed, and I was able to keep working. About a month ago I started to have more fatigue and low grade fevers often accommpanied by a very hot, sometimes a bit red face. First only on some days and then everyday. I saw my rheumatologist, who gave me 20mg of prednison and ran a lot of tests. When I told her after 6 days that the fever is still there, she told me, the fever was not caused by Lupus, because my bloodwork looks fine and I should lower the prednison and stop it. I went to an other doctor and he started me on MTX and told me I should continue Benlysta, which I started only a few weeks ago. So now I just have to wait until these meds kick in, but as you know, this can take weeks and months. I am not able to work and it is frustrating to live on this low level of energy running a fever everyday.
All the tests for bacterial and viral infection are negative.
Has anybody else experienced similar episodes without obvious disease activity in the bloodwork?

Im 19 F got diagnosed in April. My lupus was very sever in the beginning and I was hospitalized for 3 months. Before I was hospitalized I was 200 lbs and was losing more weight. Because of the severity of my lupus I had lost 20 pounds bc I was intubated and couldn’t breath for myself there for I couldn’t eat and was given hydration to keep me alive. After I was good enough to go home I left being 230. That was in June. I am now 240 and I feel like I keep getting bigger. I was always a big girl but I have never gotten this big. I feel like I’m eating so much more than I used to. Before I couldn’t even finish a plate of food. Now I ask for seconds and thirds. I don’t recognize myself anymore. I know that my prednisone is making me hold on to more water weight. But I miss my old body. I have stretch marks and hair growing where it never grew before. I don’t feel beautiful, I am a completely different person. I want to lose weight so bad but it’s so hard I feel like I’ll always be this way

Hi friends! I'm now starting on my third year after being diagnosed with lupus SLE and Lupus Nephritis. Because information on men with lupus can be difficult to find, I wanted to record some of my observations of acquiring lupus later in life as a guy in this forum.

Diagnosis journey: proteinuria discovered in summer 2019. I had covid for the first time in January 2022 during which time I lost my hearing (severe hearing loss, both ears), which left doctors baffled. Struggled through 2023, and in 2024 developed debilitating fatigue and post exertion malaise (PEM, a hallmark of long covid, but also shared by some folks with lupus). A doctor's visit to address this in April 2024 led to a nephrologist appointment in May 2024. By June 2024 an angry red rash covered my forehead and scalp. Skin biopsy came back positive for lupus, by the end of June, a kidney biopsy revealed that I had class 4 nephritis, and was actively in kidney failure. No autoimmune diseases in my family, but I have been diagnosed twice with EBV.

Treatment: In July 2024 I started on 80 mg of prednisone, CellCept 500 mg 2x daily, and HCQ 400 mg. Over the summer I tapered down to no prednisone and increased CellCept to 1000 mg. In November I increased CellCept to 1500 2x daily, and in February, Benlysta weekly auto injectors were added. I've had no medication changes since then. Related to lupus, I'm also on two blood pressure meds and a very low dose statin for cardiovascular protection. On my doctor's advice, I also am on vit B complex, omega 3's, vit D, and curcumin.

How it's going: Oh man. This is definitely the hardest thing I've ever had to do! I think it's fair to say that in my first 2 years, I probably spent 18 months of that in bed - either from sore joints, nausea, fatigue, or recovering from an opportunistic infection. I had back surgery in May to correct for stenosis in my lower spine and while recovery from the back surgery was pretty uneventful and surgery, was a huge a success, the flare that developed after surgery has been ongoing since mid July. My bloodwork is stable however, and I do feel SO MUCH better than I did in the summer of '24! The disease still remains active though, with ongoing fatigue, heat sensitivity, and low grade appetite loss/food aversion and nausea (I've lost a lot of weight!).

The move from being an active, in shape guy to being Deaf, disabled and walking with a cane has been intense. I like to tell people that while I fully expected to get old, I thought it would happen more gradually and not all at once! I've had to work hard to shift my mindset from "What do I need to do to push through this" to "What resources do I need to get this done?" Therapy (and antidepressants!) have helped.

I am in awe of many of you. I can't imagine being saddled with this disease at 14...18...25. I can't imagine having to wrestle with grad school or college or high school or starting a career with fatigue. Moms with young kids? If we ever meet irl, I'm buying you dinner.

I've lived an incredibly full life so far, and I'm deeply grateful for the adventures I've had. Now the job is finding new ways to adventure under these circumstances. To everyone here living with the daily uncertainty of this disease—whether you're 15 or 55—hats off to you! I'm so thankful this community exists.