r/lupus

I'm so freaking pissed off, ffs I told my rheumatologist about the hallucinations side effects of the HCQ and she quite literally told me that to be treated with other meds my symptoms need to be worse. Yeah sure let's just wait and see how much worse it can get before something is done.

I'm very lucky that my dermatologist spotted it and send me through so it's very early on in the disease. Seriously, why not make sure the disease stays stable instead of wanting it to run it's course until more damage has been done.

So I ended up just asking for plaquenil (brandname) which she reluctantly did bcs according to her the different manufacturer shouldn't matter

Hello, all.

I want to hear from people who live for years with autoimmune and other chronic conditions. Or from doctors.

How do you read your results?

I technically have about 10 years of experience but in reality I am an adult only for five years now.

It has come to my attention that I have a lot more to learn to feel secure in my ability to understand my conditions and in my ability to communicate with my doctors.

Like everyone here I have seen a lot of "unprofessional" doctors. So I do not fully trust them and I don't want to. I want to be able to understand everything and collaborate with the doctors.

So when you get your results in your hands, what do you do?

Is there a site or a book that I can find what every test mean? What tests are important for what. How do they impact one another.

I know that some tests may seem normal independently but looking them together might paint a different picture.

I'm wondering how many of you were diagnosed with M.S. before being diagnosed with Lupus... Almost 40 yrs ago I was told I had M.S.. It never felt like it quite fit. That wasn't denial. I could accept wherever the info led. I felt so sure this wasn't M.S. that I put up with a strong push back from the specialist when I refused the biologics that later came out. I couldn't accept the serious side effects when I wasn't sure of the dx.

Now it seems that it may very well be lupus. I was told when you have one auto-immune disease you can more easily have others. I'm not sure if it's true and it means little at this point in my life...

So, I ask who else was dx'd with M.S. before the final dx of Lupus ? .....

Hello! I was diagnosed with lupus last June and for the most part I have been ok. Today I woke up and every single inch of my body is in pain. My joints feel like they’re made of glass and I have NEVER been in this much pain. My doctor gave me a pack of prednisone which is only 4mg’s to take if I ever feel really bad. I have NEVER taken a steroid in my life. I’m scared and have no idea how to actually take them. Do I take them with food? At night? Any advice will help and I will only be taking them for a few days.

My hands are often too weak or painful to hold a phone or tablet for long. Adding a PopSocket to my phone helped prevent drops, but I still get a lot of pain and stiffness. Any tips or products that can help minimize pain when you have to use a smartphone or tablet for 30+ minutes? (Obviously using a phone less would be better, but I’m specifically looking for help when it can’t be avoided.)

howdy! i've been managing lupus rather well these last couple of years since my diagnosis, but one thing has consistently stumped me. sleeping on my back or laying down at all can sometimes cause piercing chest and shoulder pains! usually I have to sleep sitting up, and i've only recently been able to sleep in a bed properly again. for awhile now, i've been stuck to my couch with additional pillow supports. however, i'm starting to feel as if the couch is starting to negatively affect my other joints (namely my back and knees) so i'd like to hopefully switch back to sleeping in a bed. which... requires a new mattress and likely some advice.

does anyone else experience issues sleeping? waking up with stiff/locked joints, painfully sore joints, or sharp shoulder and chest pain after sleeping? if so, what helps aside from just more pain medication? and what type of mattresses would likely help, or has helped for you? at the moment, i'm looking at memory foam and pocket coil mattresses. considering how expensive quality mattresses are though, and how new i am to navigating lupus (less than 10 years), i'm really looking for advice. thank you for reading, and double thanks if you have any input to share :)

Hello! I’m starting my Benlysta auto injection tomorrow! I’m totally comfortable with needles, I’ve had to self administer many shots and I’ve read up on tips on this Reddit and spoken with my doctors. I’m wondering if there’s anything I should be doing to prep my body? I’ve heard of very little side effects but wanted to see if if anyone has any suggestions going into or the following 24 hours after!

Hi, I'm 24, and after a traumatic trip to the ER, I was finally diagnosed with lupus after months of back and forth with doctors. A bit of context, I got Covid in February developed a severe rash all over my body and was essentially forced to stay in my (dark and cold) room for a few months as medication didn't work. There is a very very long wait to see a Rheum. I had seen one, and he didnt listen to anything I said. I was also diagnosed with hashimotos at some point during this. Anyways, my symptoms eased up recently and I returned to work, which resulted in me being rushed to the ER due to my thyroid swelling so bad I could barely breathe and my hives were so bad my fiance thought I was having anaphylaxis. They gave me an IV steroid and fluids and diagnosed me with lupus, I did a prednisone pack and started plaquenil, which helped a bit. The prednisone made me feel better physically in certain ways, and much worse in others. My PCP suggested I call and ask to see a nurse practitioner who has better reviews than some of the Rheum doctors in the meantime. It would be a shorter (still 3 month) wait, so I won't see someone for a couple of months still until then, she will be monitoring my levels but is there anything I can do to take care of myself? I still feel miserable all the time. I already wear sunscreen or avoid the sun, and i've been taking the plaquenil. I admittedly haven't been coping well with the diagnosis, so research has been hard. I appreciate any advice given, Thank you for reading!

Edited for clarification on some things.

Having PT from neurologist's orders to hopefully help my balance issues. It's kicking my butt. I go every Mon and Wed and it takes me out for at least 24 hours. I'm laying here just wrecked and they've been taking it easy on me. Tomorrow will be crap and I'll feel better Wed just to do it all over again. I will say that I have really good days Friday, Saturday, and Sunday. I'm fine for much longer.

Nothing is helping. Extra strength Tylenol or CBD. The only thing that helps is sleep.

Anyone else experienced this??

I feel like I’m physically falling apart and it’s frustrating and upsetting.

I feel like I’ve been really lucky. I was diagnosed when I was really young so we got a jumpstart on finding meds that work for me. For over a decade HCQ worked great for me. I had the occasional flare but I always bounced back quickly. I was active, I’m very into fitness, I have four kids I can keep up with, very labor intensive jobs, etc. my husband has said that he looked at chronic illness different because of how I haven’t let it hold me back.

But the last three months have just WRECKED me. It started with a bad flare. I did a prednisone taper and felt great. As soon as the prednisone was over, the pain and fatigue came back. I told my rheumatologist and he offered another round of prednisone and said we needed to discuss biologics. We’ve agreed on Benlysta home injections. It’s arriving on Wednesday and while im afraid to take it, I’m desperate for relief. I feel like my body is falling apart. I’m tired all the time. Walking is painful. Exercising isn’t enjoyable anymore and it’s hurting my self esteem. I feel miserable. I just need something to work or I’m going to lose my mind.

Friends,

After thinking Benlysta was going to be a fail, latest bloodwork, after six months is showing improvement! Higher platelets, RBC, hemoglobin, HCT.

Just want to let others know, GIVE IT TIME.

I’m an undergraduate in my junior year and the first semester in person since getting diagnosed. It was going okay for a while but I keep feeling worse as the semester goes on. I’ve looked at my school’s student accessibility services, but I can’t decide if any of them make sense to ask for. Homework extensions? Longer exam times?

I have massive brain fog plus fatigue and general weakness. But the severity comes and goes. Some days I’m perfectly fine, others I feel like I’m going to pass out. Honestly I just want to be allowed more absenses so I can actually rest, but my school doesn’t allow attendence accommodations. I don’t know if it’s worth going through the process of registering/getting my rheum to fill in forms/submitting documentation/having a meeting with a specialist to get accommodations.

Do any of you have accommodations? Is it worth it? Which ones?

My other thought is going to part time attendance next semester. It would be frustrating, but might be the route I have to go. Thoughts?

TLDR; any tips for getting through the worst side effects? Was the first time you took it the worst side effects for you or later?

Hey all, newly diagnosed, but not very new to the symptoms.

I just took my first dose of methotrexate Saturday night, coming up on 48 hours ago. The first 12 or so hours were mostly weird brain fog and thinking this was way easier than anticipated. Then it hit me like a mack truck.

I had a migraine headache in my top 3 worst of my life. If the worst part of it had lasted any longer, I was seriously considering a trip to the hospital just to rule out any brain issues. After that, it's been increased body aches, rashes and fatigue. The brain fog is still pretty heavy, but I think I'm doing alright navigating that for the most part, at least.

Any tips, tricks? Suggestions? What was everyone's timeline like? Did it get better or worse for you? Do I really need to wait 6 weeks to find out if it'll help me?

Thanks so much in advance, this is pretty intimidating

36f diagnosed in 2011, on Plaquenil

Do y'all get puffy in the face during flares even without steroids? My I've had bloodwork done, kidneys and other organs are fine. My inflammatory markers in general are actually all fine as well, but I'm definitely flaring, and my rheumatologist agrees. I'll be starting Saphnelo soon. Just tired of looking swollen in my face.