r/lupus

I’m no doctor or scientist, simply just a lupus patient who loves weed. I tried weed occasionally before I was ever diagnosed but started smoking everyday once I was. Recently, I’ve been trying to cut back on smoking and edibles and I’m noticing lupus symptoms come up that I haven’t seen since I started my medication. This is just a theory but I know stress can be a huge trigger for flare ups and weed helps people NOT stress. So could daily weed intake really be beneficial here or am I just trying to justify falling back into old habits? Could cutting off weed really be hurting me rather than helping? Who knows. Just something worth sharing.

Mostly venting because this is so emotionally damaging and I need to let it out.

The first time this happened to me it was very clearly discrimination. I got sick shortly after I started my first job post grad school. I was hospitalized for a week because of kidney issues and once I returned to work, took medical leave. After my medical leave I was given a complete BS PIP, told by HR I wasn’t “allowed” to still be sick, basically tortured for 90 days on the preface of performance issues and then fired. I hired a lawyer and settled - but the experience was so unbelievably painful and inhumane.

This time around, I started a job I took a big pay cut for because it was something I thought I’d find really fulfilling (ironically, a healthcare institution). I let my manager know week 1 that I had SLE and needed some very basic medical accommodations. This was ignored forever, until I brought it up more formally. He tells me not to request them with HR, and then a week later uses my ask for some simple office supplies against me - saying others had comments that I was demanding and there was feedback on my communication style. Totally bizarre because I had only mentioned this to maybe two people in the context of asking how I could request these items and noting it was medical.

Tone totally flips from here on out. I get called in and told they don’t want to continue with me past my probation period, literally for zero reason but “interpersonal dynamics” via feedback they can’t share. I’m repeatedly told my work product is brilliant, I added a lot of value, etc - but that the soft skills (which they provide no other examples of) are too significant to “coach me on”.

Super painful. Manger who knew that I depended on this probation period to get healthcare, I dropped out of several interviews because he guaranteed I shouldn’t be concerned of anything, consistently gave me good feedback… just does a 180 and decides I’m too demanding and lets me go. I’ve been in tears since.

Like I cannot do this anymore. I don’t know how much longer I can fight a system that’s been set up to let me fail.

Hello, I’ve been taking HCQ for about 10 weeks now and my only symptom is under eye swelling that has gotten much better since starting. The one thing I noticed is the swelling does come back when I get into the sun but not as bad as it was before. I have no joint pain and I haven’t developed a rash. I know HCQ takes more time to work and I thought my labs were a bit better than before. He’s really concerned about my ESR because it is 113. There was some protein in my urine before but my urine is back to normal. My dsdna was a 10 before but now it’s 15. My c3 before was a 10 and now it’s 14 and my c4 is now at 78 and before it was 65.

My rheumatologist now wants to put me on a low dose prednisone, cellcept and another medication I forgot the name of with HCQ. He wants to start benlysta as well because he’s concerned with lupus nephritis. I was supposed to get a biopsy done, but the hospital didn’t take my insurance so I’m still pending that. My kidney functions have been normal so far. This is all just so confusing to me. Especially when I thought I was getting better. I have a nephrology appointment soon and my rheumatologist wants to know their opinion.

My rheumatology NP believes it’s early lupus and I have a better chance of remission with aggressive treatment. What do you guys think? I’ve had people tell me when you have lupus you know, and finding all of this out is just so confusing.

I’ve been on prednisone for about 8 weeks so far (started on 40, then tapered to 30, 20 and now on 10) for optic neuropathy. It was making me crazy at first and I felt like shit.. and of course as soon as I started to feel really good, we started tapering 🥲 all for the best though, I know. And I’m lucky that the inflammation was starting to come down with such a low dose.

Still waiting for vision to improve (it’s been 12 weeks).. but I’m starting to accept that there’s some level of permanence. I’m also afraid of it rebounding/happening again once I’m fully off the prednisone.

I have tried the Laroche Posey and Cetaphil mineral sunscreens and both have made my eyes burn. I get the same reaction to every single makeup product I use around or on my eyes. How am I supposed to protect my face from the hot sun when my skin doesn’t even like the most natural and sensitive sunscreens. My eyes are constantly watering and burning and are so red. I look high whenever I put sunscreen on I’ve tried antihistamine eye drops and they only help for a couple of minutes before I’m back to burning and crying.

I’m an international student in Australia, and my lupus has gotten a lot worse since I’ve been here. Because of the pre-existing condition rules on my insurance, I don’t get much covered, so I’m paying out of pocket for appointments, bloodwork, and meds. I can just about manage it, but it’s getting tight.

My rheumatologist says I really need stronger treatment because I’m still flaring about 3–4 times a year, and it’s been getting more severe. Right now I get through flares with high-dose prednisone tapers, but I’ve also got joint pain even when I’m not flaring. He’s told me doing prednisone that often can actually cause long-term damage, which I didn’t realise.

He’s suggesting biologic meds to help control things and reduce my need for prednisone, but without Medicare I’d be looking at something like $500–$2000 AUD a month, which I just can’t afford on top of rent and tuition.

I’m only one semester in, so I haven’t lost much academically yet, but I’ve already spent about $3k of my savings this week alone on medical costs, and it feels like that’s going to keep happening every few months even before any stronger treatment.

At home, everything would be covered medically. Here, I’m paying for basically everything myself.

So I’m stuck trying to figure out if I should go home and actually get proper coverage and treatment, or stay and try to push through the next couple of years while basically managing flares with prednisone because that’s all I can afford.

I was diagnosed with Systemic Lupus Erythematosus at 17, but I had symptoms even before that (extreme fatigue since around 16). Over the years I’ve had a range of physical symptoms like joint pain, inflammation, visual migraines, episodea of vision loss, fainting episodes, unexplained fevers, anemia, pleurisy, pericarditis, nephritis. 

But what’s been most confusing and distressing is something that started around 2020. I feel like there was a pretty clear shift in my cognitive functioning, especially in what I now understand might be executive function. It’s like there’s a disconnect between intention and action. 

What makes this worse is that before this, I was actually very disciplined. I knew how to study, I was organized, I passed all my first-year university classes. So this isn’t about not knowing what to do. 

I’ve tried pretty much everything on the “behavioral” side: planners, to-do lists, productivity systems, studying with other people, online accountability tools. None of it fixes the core issue.

At the same time, I’ve also noticed more impulsivity and less self-control in general.

I have never come across anyone describing something quite like this. What I’m experiencing doesn’t feel like typical “brain fog” or confusion. It feels much more specific. It’s very similar to ADHD-type symptoms, but these started after age 20, which makes it incompatible with an ADHD diagnosis. 

Over the years, I’ve repeatedly brought this up with my rheumatologist, and the response has consistently been that it’s “psychological” and that there’s no point in pursuing further neurological testing.

On the psychiatric side, I’ve tried an extensive range of treatments—honestly more than I can easily list. This includes: multiple ADHD medications (essentially all available options where I live) antidepressants, even at high/OCD-level doses, antipsychotics, benzodiazepines

Despite all of this, there has been no meaningful improvement in executive function. 

At this point, what makes it even harder is the sense of isolation. Most people don’t understand lupus fatigue to begin with, and even fewer can relate to a cognitive issue like this. The combination of both has made it extremely difficult to explain what I’m experiencing or to feel understood.

It's also the trauma of having gone through chronic chest pain even after pleurisy and pericarditis had supposedly gone away. 

After all these years, I’ve finally found a new rheumatologist who actually wants to investigate this properly. Ordering an MRI, looking into brain-related antibodies. But this is the first time in about six years that anyone has been willing to do that.

So part of this post is me asking whether anyone has gone through something similar, and part of it is just me venting after years of feeling misunderstood and not properly evaluated.

Ok, so I posted a couple of months ago about a visit I had with a new rheumatologist (I moved states). I was diagnosed last summer when I lived in Tennessee. I moved to Virginia at the beginning of the year. So this new guy:

He basically told me that he didn't believe my diagnosis and discontinued my medications. My symptoms are all joint and muscle pain but it can get pretty severe and it's my hands that have gotten worse in just a year's time. Well I had been on medications that were actually helping me! After his exam, he said that he didn't notice any swelling. I'm like "no shit! I've been on medications that have been HELPING ME!? He told me that if I notice any swelling to call his office and I'll get seen asap so he can see if my hands are swollen.

Flash forward to about 3 weeks ago. I started to notice my hands were starting to feel achy all the time, then my knuckles would throb so bad that it makes me cry. Then I noticed that when my knuckles would bring my pain level to almost a 9, they would practically grow in size.

This past weekend the pain has been non-stop. I've taken ibuprofen and it's not helping. I'm miserable. So I called his office on Monday and got seen yesterday afternoon. After he looked at my hands and pressed on each joint... Which are fucking swollen! Looks me dead in the face and said he didn't notice any joint swelling. I practically shoved my hands in his face and wanted him to acknowledge what everyone else around me can see. Then he takes my hand and barely touches the area above one of my knuckles and says, this is your joint and it's not swollen.

I was so pissed! I am not one who cries but I got so mad that I wanted to cry. He then says that I need to see my PCP about my hands and that he sent her his recommendations on treatments. Like what the actual F?! He asked me which hand hurt the worst. I told him my left, then he says he's ordering an ultrasound on that one hand...I guess my other hand also being in significant pain doesn't matter?

I left the office and as soon as I got into my car, I called my insurance company, told them what happened, and that I wanted a new doctor. After heading what happened with that Dr, she offered to help new file a complaint. So of course I did.. Cause fuck that guy! then she gave me a list of other rheumatologists that are in my network.

This pain is so bad that it's now affecting my blood pressure. Yesterday it was 128/101. I've never ever had a blood pressure reading that high until this last few weeks because my pain level is increasing significantly. I can't sleep.

Thanks for being a great community for me. I just really need to hear feedback on this crappy situation.

Okay so I made a post earlier so sorry if I’m flooding the sub. So as of right now my only symptom is swelling and my nephrologist pointed out that I have a malar rash. So I was I referred to a nephrologist because I had protein in my urine once (0.197 protein/creatine) but recent urine work shows it’s back to normal. My nephrologist was on the fence about the biopsy in the first place since the protein wasn’t significant. My rheumatologist wanted to put me on cellcept but my nephrologist just said i would need the biopsy to confirm if it’s needed but my treatment plan is basically imuran, HCQ and prednisone 10 mg, plus possibly the cellcept. My mom thinks I should get a second opinion on my treatment plan, but I understand why my rheumatologist wants to be aggressive. I just didn’t want to put my body through overkill, especially since I’m not in pain and my c4 (14) and c3 (75) and actually a bit better than my last lab (10 & 65) but my rheumatologist is worried about my high ESR of 113

Would you guys get a second opinion or just do the treatment?

Does anyone here get weird swelling and numbness/tingling inside your lips and cheeks? I thought it was just a food allergy at first but then realized it wasn’t being triggered by food at all.

It started when I thought I had food stuck up between my upper gums and upper cheek, so I went in with floss and a toothbrush to the area, but then within minutes that inner mucosal area started to swell and get numb (which only made the sensation of smth being stuck there worse). At one point it felt like I’d gotten a lidocaine shot there but still felt sore. Normally ends in swelling in just the inside of my upper lips too, and has happened multiple days in a row now.

It resolved once after I took Benadryl and another time when I just left it alone for an hour or two.

Just curious if anyone has experienced anything like this and if it’s worth even asking my doctors? I’m picturing them just brushing it off as weird “inflammation” stuff. Weird swelling is such an annoying pain in the a** sometimes.

Hi! I’ve been thinking about posting for a while now, appreciate all the helpful info I read here 💜

I got diagnosed about a month ago: my official paperwork says mild lupus spectrum disorder, and my rheum called it lupus. But I just feel like…I’m not “sick enough”?

I know that’s silly. I feel fatigued basically every day, I have headaches all the time, I feel the effects of the arthritis in my hands and feet (and I think ultrasounds can’t really lie about that). I’ve been on hydroxychloroquine for about a month now and I feel like that’s been helping with the stiffness and swelling a little in my hands and feet. But reading here and a little of the lupus encyclopedia, I just keep second guessing if it’s really “that bad”?

I have the malar rash according to my rheum (I just thought my redness was due to frequent headaches and overheating, but I hadn’t realize that a rash doesn’t necessarily mean it has to itch, cause it’s not itchy, it’s just got that distinctive shape). I have insanely reactive skin, anything can cause hives or redness; I’ve had some hives and rash popping up recently, not sure if it’s due to the hydroxychloroquine or changing weather or something else.

I’ve often been told I’m a hypochondriac, by my family mostly, so that has me questioning it all, despite trusting and believing in my doctors and medicine and science obviously. I’m also overweight and trying to lose it, so I keep wondering if all these symptoms will go away if I lose the weight and it’ll turn out to have been that all along. 

Anyway, I think a lot of that info probably isn’t necessary lol but I had a few questions I’d love to discuss:

1. have any of you experienced that feeling of ”not being sick enough”?
2. for lupus in a mild state, is there anything you all would recommend to help hopefully keep it that way as long as possible?

I‘m hoping to purchase the lupus encyclopedia so I can read more into the lifestyle part of things, my library loan lapsed before I could finish. I’m also hoping to get The Girlfriend’s Guide to Lupus, not sure if anyone else has read that?

thanks if you read all of this 🫂

Maybe this is because I have RA too but sometimes it hurts so much that I just CAN'T. But I still have to anyway. I just want to curl up on my couch and sleep. 😫

I’ve (30) been seriously thinking about whether or not I want kids for a while now. I was diagnosed with lupus in 2019 and thankfully it’s been pretty mild for the most part. Im just exhausted alllll the time. If I ignore it I either flare up or just shut down and sleep for days.

I’m going to see an OBGYN to really understand what pregnancy might look like for my case, but I was curious what your stories were. I understand women with lupus can have healthy babies, but how does it affect the woman herself? What was the pregnancy REALLY like for you?

I want to hear it all and really understand what I might put my body through if I do choose to have kids. Please don’t be shy, I have 3 older sisters and saw it all with them. The only difference is they don’t have lupus and actually had energy before the kids.

I worry I won’t be able to rest. It’s already hard for me to feel “energized” or awake in my day to day. I can’t even begin to imagine what a kid will cause.

Hey friends! I have a great rec for a sun umbrella that I wanted to share. The Six Moon Designs Silver Shadow Carbon is a great sun (and rain!) umbrella that is super light and easy to carry. It has a reflective top surface so it also helps keep you cool under its shade. The carbon version only weighs 6.8 oz so it’s an easy carry in your hand and also stows well in a backpack side pocket. They make a mini version too! It’s on sale right now for Earth Day if anyone wants to check it . I bought mine for hiking but have been using it out and about too and it’s really nice.

I’m not affiliated with Six Moon.

Pretty much the title. I HATE having things on my skin, especially if they're oily/greasy. I tried to put up with sunscreen for a while but it bothered me too much (I tried a few brands). So I stopped putting it on my body and just did my face. Then that fizzled out too. My rheum insists that I should use it indoors and outside, my bf tells me to at least use it on my malar rash.

Would just putting it on my rash help reduce it at all? Is everybody else just ok with being greasy all over all the time? I do use UV blocking shirts pretty much all the time and long sleeves often. I ask because I feel like the skin on my malar rash is getting thicker, since starting Imuran I don't have sun sensitivity anywhere else.

My lupus is considered mild, but I’ve noticed a pattern where if I get even a tiny injury near a joint, that joint ends up getting really inflamed and painful for a long period of time.

The first time it happened was with my knee after I banged it pretty hard, so I didn’t think much of it. But then I got a splinter near a joint in my finger. I actually thought part of the splinter was still in there, but it turned out to just be inflammation.

Now I have a small paper cut on my thumb right over the joint (from about a month ago), and I’m still getting pretty significant joint pain there that comes and goes. There's always A dull ache, but sometimes the pain stops my in my tracks.

I’m curious, if anyone else experiences this kind of reaction to minor injuries? This knee bump still bothers me with flares. The splinter pain took about a year to stop. I'm wondering how long I'm going to suffer from this darn paper cut.

Ever since I've been diagnosed with Lupus, I've been experiencing muscle cramps in my legs and feet more often, especially in the thighs and calves. I read that it's considered a very common Lupus flare up. Has anyone else been experiencing that since their diagnosis? I've experienced it like at least 5 times already.

Hi everyone, I’m hoping to hear about your experiences with Plaquenil. My doctor recently prescribed it to me, and I was actually really relieved to finally have something that might help with my lupus. I also have vasculitis and APS, and the most debilitating issue for me day to day has been severe hives. After reading through posts here, I’ve seen some people mention that Plaquenil made their hives worse, and now I’m honestly really scared to start it. My hives have already been so intense that it’s been affecting my mental health, and I’m worried about making them worse.

I don’t see my doctor again for a while so I was wondering if anyone here has experience with Plaquenil and hives, especially if you also deal with vasculitis or APS. I know everyone reacts differently but hearing how it went for others would really help me feel a bit less in the dark.

Thank you 🤍

I’ve always run into rheumatologists who don’t seem to care. They just ask me routine questions and make me do some movements and that’s all they really do. I was diagnosed 15 years ago, it was the same back then. They even brushed off some of my symptoms saying oh you’re probably tired from hearing your baby sister cry all night etc. I eventually gave up on trying to advocate for myself and stopped mentioning symptoms I thought were minor.

Then I’ve recently been dealing with lupus nephritis complications and the nephrologists are way more involved in my treatment now. Not perfect still but they care better than the rheums. I mean I get that with kidney involvement, there aren’t much that rheumatology can do, but I barely know who to even reach out to if I have lupus related symptoms. I know I have to figure these things out on my own, but still I feel unwelcome to reach out if that makes sense. The last rheumatologist I saw didn’t even know I was previously diagnosed 15 years ago and was just reading off my charts as she went. Then the only things she offered during that visit was refills for my meds and the next appointment which is in 3 months. I feel like that’s a little too further away given that I have active inflammation that’s affecting my kidneys? Or am I acting needy and overly dramatic?