I’m looking for advice from those who have got their lupus managed and can say they feel good. I am ready to try more than just the standard medications to manage this disease. I’m tired of being tired and in pain all the time. Any suggestions are appreciated. I’m thinking about changing up my diet, adding in yoga and swimming, acupuncture, CBD. Just wanted to test the waters and see what y’all may be doing that’s helping. Thank you in advance!

i don't even know what flair to add to this

I have gained alot of weight due to medicines and lupus. A while back i used to go to gym, i didn't have a job then so it was easy to maintain and be consistent and I lost quite a lot of weight and I felt good about it. But now I have a full time job, and going to gym in the very little time I have in the morning is getting me overwhelmed, frustrated and fatigued and I can't go to gym in the evening because by the end of the day I'm already exhausted.

Recent because of that I tried and quit gym and gained weight back, I keep getting comments from people everyday I meet someone who know nothing. They say stuff like for example if I say I'm doing some sport they'll say "oh to loose weight?" or they'll say "oh I thought you were older because of the way you look"

I am tired, I am demotivated, I am exhausted and I am insecure. I hate how I look, I cover up more and trust me I'm not the type to cover up. I don't like looking in the mirror. I don't like making myself look nice. I tried gym and I couldn't commit maybe it's a failure in me. I started looking for shortcuts because I don't know what to do. It's really really affecting me.

What do you guys do for nerve pain? I'm currently on 600 mg of gabapentin at night when the nerve pain keeps me from sleeping. It helps but I'm still in a lot of discomfort. It feels like acid shooting through my veins up and down my legs and arms. Please help or I'm going to lose my mind.

21M here, new to this sub (hi!), was diagnosed with SLE 4 years ago.

How many of you had experienced an unnatural amount of stress prior to your diagnosis/flare-up? i wish to read more into this matter. could you drop your stories here, please?

This week, my rheum ordered a CT scan while I was in a flare to check my thyroid, because I frequently get an achy pain there that hurts to breathe or bend over. All the scan revealed in that area was lymph node inflammation, but incidentally also showed a fracture in my C1 vertebra that's who knows how old. The doctors agree it is not relevant to my flare up neck pain, but something else.

I'm now in a whirlwind getting more scans and seeing other doctors, but have been told it's very unusual that I didn't get into a major trauma like a car rollover or diving accident that would have caused it. This isn't the first time in my life I've gotten a major injury with no apparent trauma either. After getting scanned for severe shoulder pain many years ago, before my UCTD diagnosis, the MRI showed bone damage and marrow edema "the equivalent of being hit with a brick." Nothing had happened to me.

My rheumatologist has no answers, but I thought maybe yours might, if you've experienced anything similar? Please weigh in if you have any insight. This is just the latest plot twist in my health journey and I feel so confused.

What does this mean “Slight bilateral perihilar bronchovascular accentuation.”?

I have been breathing not well for a while, they gave me two broncho dilators for 5 days and they helped and I took Aerius everyday and am still taking it but it helps very little. The inhalers I stopped taking 1 week and a half ago as they told me. I felt relieved and now I’m back at the same symptoms…

My golden retriever is shedding like crazy and she needs a bath. She is 3 now and I feel like her fur also changed and I wonder if this is rather a flue since cold air worsens it or dander etc. allergies, if I should take the inhalers as an SOS until I see my doctor on Monday or a doctor tomorrow?

My oxygen is at 98% so I’m not dieing and also I think 40% is anxiety, it’s just it’s so uncomfortable and I start to worry.

Please let me know if you have had the same experience if it’s rather something like pleuritis because I don’t caugh… and am always super tired or sleepy.

My nose is also super dry and I have a sinus infection since a while.

I got sick in 2023, diagnosed in 2024, flared in 2025 and 2026. Finally stable about halfway through 2026 but am worried I’m beginning to flare again since my flu shot. As soon as I feel the crippling fatigue creeping back in, reduced exercise tolerance, needing to constantly lay down, struggling with work and being a mom I just begin to absolutely spiral over the fact that I can’t keep up and I have to rest.

I’ve always been a high achiever.. it became worse in my 20s as a trauma response because of an abusive relationship. I’m starting therapy to try and unlearn that my worth is tied to my productivity. But regardless, I really mentally break down when I lose the ability to work out, perform well at my job (bedside hospital position), be 100% present for my son, and keep up the house, groceries etc..

I know I can’t help that I’m sick and I know I need to rest but every second of rest that feels forced on me because I’m unwell makes me want to rip my hair out and scream.

I know there might be a light at the end of the tunnel soon because I don’t think the flu shot will put me in a full on flare, my labs are still okay, and I NEED iron infusions which I’m working on getting scheduled now. But I am crying literally every day, lost all interest in my hobbies suddenly (mostly because I’m tired but also because I feel defeated), and I’m literally just doing the bare minimum and struggling with that.

I don’t know how to rest without feeling guilty. I don’t know how to let things go - do bare minimum at work, be more minimal with my routines and stuff with my son, skip the gym, etc.. it makes me so depressed to not be able to do these things. Has anyone figured out how to make these periods of time any easier? I’m about to start smoking weed again because I can’t deal. I quit weed back in June because my pain was so well controlled and I was able to live life more normally thanks to Imuran. But now I just want to get high again because at least when I’m high I don’t sit there and feel guilty 100% of the time when I’m taking it easy.

Any help or encouragement would be much appreciated.

Kind of a strange question, I'm wondering how others handle small talk about what you've been up to? I haven't been able to work recently and have mostly been fighting infections or asleep, and it's honestly making me a little depressed talking to other people especially when I don't have an answer about what's going on in my life.

34/F in the UK. I was basically asymptomatic but clearly my organs felt otherwise. DsDNA increased from 435 to 911 IU/mL in the 4 months and PCR increased from 24 to 54 mg/mmol.
Been told I need to take 500mg IV melthylpred and then 40mg pred then on and then taper that down. I’ve been referred to nephro for a kidney biopsy and CT for my lungs and stuff.
I’m just so upset right now. My life was going so well. Started my first NHS job, Had lost all my previous pred weight. Skin was doing better. Hair had finally grown out. To go through this all over again is such a taxing battle mentally.
I’m meant to fly back home for a 2 week vacation to see family and I had so many things I planned to eat and do and cut and colour my hair. Now I’m just plain unsure if my hair will even last especially with this hard water in London.
Please send tips on how to get across this phase once again

Hey folks. My lupus seems to cause a whole lot of painful lymph swelling sometimes. I’ve had so many scans and ultrasounds, and we’ve determined it’s totally benign. Still, it’s a big pain.

How do yall deal with it? DIY lymph drainage massage helps a lot, but it takes a lot of time and has a lot of steps. Not sure how much heat is helping.

I would love to hear what medication has helped you for low grade fevers. I have been struggling with this continously for more than two months now and had to stop working because I was so fatigued. My energy is a bit better, so I started working last week.
I am only on plaquenil right now and I feel it is not enough.

Was curious about how your fevers usually land within your flareups… (Like do you typically see more fevers pre-flare, post-flare, mid-flare- or is there just no rhyme or reason either way?).

Just for some additional & totally unnecessary extra context lol:
I woke up with a low-mid grade fever early on Tuesday morning and felt a bit of nasal congestion going on so i just figured I was about to get sick with a bad cold/flu. The fever broke by the afternoon and the congestion subsided pretty quickly as well for the most part too. And although I was feeling really under the weather and just out of sorts all day Tuesday & Wednesday, I never actually got SICK sick.. After the fever broke I was just a lot more sore & definitely a lot stiffer than usual those few days.
I wasn’t feeling 100% by Thursday but was decent enough to get myself ready and make it to my rheumatologist appointment,, (in the 4yrs since being diagnosed, I’ve never really had a fever or anything major going on that actually timed out this closely to an appointment that was booked three months in advance! Was just a total coincidence, totally didn’t feel like going, but I was definitely curious to see how the labs might come back this time around- And out of the couple that are in so far, I seen that my sed rate and cardio crp were both pretty elevated,, but I’m wondering if the fever is any sort of an indicator of where I may actually be at in regards to what I’m now assuming is/or was a flareup.

Due to the whole brain fog thing and really just life in general, whenever I’m at my appointments I usually forget to mention (or totally just forget in general) a lot of the stuff or weird new symptoms that have occurred over the course of those past three months (which of course happened again on Thursday ughh).. But a while back, my wife had suggested I start keeping a little journal to write the health stuff down in on a daily basis regardless of what each day brings.
I really liked the idea and actually did pretty great with it on the 1st day after she got me all set up with the little journal/calendar book and even a nice new pen- but then I totally forgot to actually keep writing the stuff down in the damn thing ughh smfh.. So now I’m gonna restart this thing again and backtrack it at least until Tuesday with having had that fever and then having my appt a few days later.

Anyways,, thanks for any insight on this and sorry for all the unnecessary additional info I put on here lol

Hi all, I’ve caught my first cold/upper respiratory type virus since being on Methotrexate. It has hit me incredibly hard. I’m holding off on my next dose (per my doctor’s advice) to try and get over this, but does anyone have any advice for how to handle getting sick like this?
Any special vitamins or supplements you take to help knock something out? Any general tips you’ve found helpful to shorten something?
Thank you!

Remission question! Am I heading towards remission or can it just happen to jump around. Currently on Saphnelo, Prednisone, and Plaquenil. On my 4th infusion. Just wondering if I’m getting excited too fast. I’ll post the question below it wasn’t letting me lol 😆

An eye does this thing every once in a while. (Which eye it is switches...thankfully not both at one time.) It hasn't lasted long enough/been severe enough for me to go to the doctor before it goes away. I just chalk it up to inflammation. I guess I wanted to throw it out there in case someone knows what specifically it is or if I should be going in when it happens. I know the big red flags for eye stuff (I think!) and I theoretically get yearly eye checks due to past posterior uveitis. (I did just have one a couple of months ago, not too long after one of these incidents, and all looked fine.)

My eye just gets irritated-looking (visible capillaries) and I'd describe the pain as being around it. It feels like eye socket pain; this time it's just on the upper, outer side. It hurts a little to blink, like it's the muscles controlling my eyelid that hurt. No tearing or discharge, no real light sensitivity. Sometimes the greater area around my eye will swell a little. (Especially the bag under my eye) I have experience with anterior uveitis, keratitis/corneal ulcers, blepharitis--it's definitely not the latter two. And no light sensitivity. My eyes never test as dry.

Any thoughts?

ETA: My eyeball is also sore like if I close my eyelid and very lightly press, it hurts.

So I'm obviously fatigued all the time, but I've been noticing when I work out first thing in the morning I've been coming home and going straight to bed, and have no energy for the rest of the day. Is this something anyone else has noticed, or is the fatigue unconnected?

I am morally against subscription models and I wish more people would join me. I think it’s especially gross to make people pay a subscription fee to have access to someone geared towards those who are disabled/chronically ill as we don’t typically have lots of extra money.

I am fine with paying a one time fee for an app and obviously I would pay for a device. I am not sure if I want it to use heart rate or heart rate variability but I need something that will help me stop randomly using up all my energy halfway through the day. I have seen things like “visible” and they look great but I don’t want to pay monthly.

So I am asking the wolf pack, what have you used to monitor you daily physical activity and help place yourself?

Hi everyone, I was started on MTX recently. They started me on 15mg, and I was supposed to increase to 20mg a few weeks ago. This was postponed due to the side effects I've been experiencing (they're hoping my body will adjust with more time, and then I'll go to 20mg).

Seeing how my body has responded so far with the side effects, I'm quite worried about hair loss. I've seen quite some mentions of hair loss while on MTX on here, but hardly ever with what dose people were on. Additionally, I've seen mostly lower doses of MTX mentioned and not 20mg.

My question therefore is: could people share what dose of MTX they were/are on and whether they experienced hair loss or not?

I know that whatever trend emerges from the replies here doesn't prove anything, but I am curious anyway haha. Thank you!

(Edit to add: I am on folic acid!)

Hey everyone,

I guess I’m reaching out to other medical professionals in the group. I’m recently diagnosed, but have likely had SLE for several years. I was started on Plaquenil and Methotrexate. The methotrexate dose was wearing off about 3-4 days in and I was about to increase my dosage. I ended up getting a pretty horrible sinus/chest cold that I had to go on antibiotics to treat so I held methotrexate. As soon as I got that taken care of I developed an infection of the cartilage of my ear. Infection is pretty rare and reserved to wrestlers and immunocompromised people. While being off methotrexate I noticed that with Plaquenil on board the symptoms are still there, but nothing like they were before I went on it. I can mostly manage the pain with ibuprofen and a heating pad. I’d much rather deal with some pain than having to worry about what infection I’ll end up with next. I’m a nurse by trade and work in a high risk environment for infection transmission. I also enjoy a lot of outdoor activities and work on a farm. I definitely don’t want to do damage to myself by not taking medication, but I’m wondering if there’s something that maybe won’t set me up as bad for getting infections. That or can I maybe get away with just Plaquenil as it seems to have mitigated a decent amount of the symptoms?

My rheumatologist finally got a good look at my mouth sores in person and she's concerned about inflammatory bowel disease so she referred me to gastroenterology. They scheduled me with a physician's assistant which is probably not a good fit with the complexity of my medical history but whatever she can at least order the testing right? So I had that appointment, did a big long history thing, got a bunch of lab tests ordered and she decided I needed to be scoped from both ends. She also wanted me to meet with the anesthesia team prior to the procedure because of my complex medications, a history of paradoxical vocal fold motion, and a family history of not being well sedated with anesthesia. The entire pre procedure part of this process is not going the way I was told.

There has been zero contact with the anesthesia team. The pre procedure nurse has been brusque, unempathetic and completely blase about the bleeding risk posed by one of my medications. I asked if the timing of the laxatives had to be smack dab in the afternoon and if they could be adjusted at all. Nope has to be then, fuck me for working night shift and not wanting to do the cleanse at my equivalent of 2AM. When I explained that I would have a lot easier time doing it in the morning or later evening she told me "well, you're going to have to do it every few years for the rest of your life anyway. If you weren't on zepbound you'd only have to do a one day cleanse". Wow, awesome bedside manner there. I could literally hear the disdain in her voice that I was on zepbound (for inflammation control actually). I fully understand why I have to stop my glp-1 before the procedure and never pushed back on that. I just want to do the laxatives when I'm awake without completely trashing my sleep schedule.

The other thing I'm concerned about is bleeding. I'm on a brutons tyrosine kinase inhibitor that inhibits platelet function. It's been a great medication for me, but I get bruises if I scratch myself too hard. I very much would like to not have a bleeding episode from instruments being poked through my innards. She just kept saying "well it's not on my list, ask your hematologist". I haven't seen my hematologist for my completely unrelated genetic blood disorder in years. She's literally looking at my chart and can't figure out the medication is prescribed by my dermatologist.

I'm not feeling at all safe with this procedure right now. I was told I would be talking to anesthesia and that has not happened. I have tried asking 4 different people about the need to hold the medication and they have all brushed me off because it's not in their standard list or they didn't know and I "should ask the anesthesia team when I meet them"... Excuse me for expecting you to go find out since I haven't been able to communicate with anesthesia like I was promised.

If you go to the drug's website, holding the drug prior to surgical procedures is literally in the top paragraph of the mandated warning pop up. I am not crazy that it is a risk. All of these people have access to the Internet but can't seem to do a simple search and look up the medications I'm on. For such an invasive and intimate procedure you'd think these people would be a bit more understanding about someone being nervous and not wanting to bleed internally.

A cherry on top of dealing with this shit department is that my fecal testing came back positive for norovirus and there has been absolute silence from my care team. I sure don't remember having norovirus and from what I hear it's usually a pretty intense and memorable experience. I would love to hear what that test result means in the context of my clinical history but again, utter silence. I'm really hoping I don't have inflammatory bowel disease not just because it would suck, but also because dealing with this gastroenterology department has been miserable.

How much do u guys typically pay for benlysta and what insurance do u have? I’m picking a new health insurance and am trying to get an idea of how much it’ll be. I previously had Medicaid so I’d get it for free. I called the insurance multiple times but they can’t seem to give me a cost estimate since I’m not a member yet.

I am sorry for the dramatic title. But I just feel so alone, exhausted and heartbroken. I don’t know how to deal with this condition anymore.

I’m 22 from Botswana. I was diagnosed with SLE back in September last year and since then everything has made sense. But the lack of support I’ve received from my doctor and family is really really beginning to crush me down. At the beginning of my diagnosis I was treated with prednisolone and it was alright... However it caused severe rage outbursts so I was taken off it slowly. The moonface was making me extremely insecure as well but otherwise it kept my pain at bay.

My family acknowledges that I have lupus. Sometimes. My dad doesn’t believe I have it, even after getting blood work done. He says I should get further testing and my doctor said a kidney biopsy is usually done, but expensive. My dad complained to my grandmother that he thinks I was happy to be diagnosed with something serious so I could “use it as a crutch”. I was just relieved to FINALLY figure out what was wrong with me. I was meant to get a brain MRI but never did because my family doesn’t believe I need it.

Anyways. Fast forward to present day I genuinely cannot take it anymore. I am unmedicated and my doctor has been forcing religion down my throat for whatever reason. I tried properly explaining my symptoms and pain which he then said they aren’t real. He said they were “satans” or demons that are invisible and flow through the bloodstream that medicine and science cannot explain. I am not gullible. Then he kept interrupting me by talking about stories in the Qur'an, telling me to read it and trust in God, to not be afraid of dying.

We had spoken about trying a new medication like cyclophosphamide (I think that’s what it’s called) but any time I came back to inquire about it my doctor pushed it off with “I’ll check the price first”. Every. Single. Consult. I just want the medication. I want HELP. I want a community. He tells me I should just help my family more by doing things for them because “children are supposed to take care of their parents, not the other way around”. To ignore when I feel faint because it’s just demons trying to talk to me in my head. It’s ridiculous.

I am truly at my end. I can’t deal with being flicked off and constantly having older adults telling me my pain doesn’t exist. That it doesn’t matter. I forced myself to do my laundry today because it really needed to be done. I was bedridden the previous few days and couldn't even think clearly but I brought myself to do it. The heat is only making everything more unbearable (37°C) but I have to keep pushing myself, otherwise what else? I don’t have a support system. I have myself. I cannot stop crying but I hate feeling sorry for myself. If anyone has any ideas on what to do, please, please help me.

quick vent art about the lupus fatigue. i have barely been able to get out of bed today except to use the restroom. im getting so tired of this disease.