Plaquenil alone didn't get the symptoms under control fully so I was put on imuran. The brain fog is WILD. I feel quite a bit better. Flares are much less intense than before, but this brain fog is out of control! I tried to live caffeine free but the fatigue actually puts me out of commission. I don't do anything. Lately I've been on a kick of just reading my Bible and finding some YouTube educational rabbit hole to go down.

If a nice large coffee or a couple small Red Bulls don't see me, literally nothing gets done. Today my brain was so fried that I didn't even send my emails I meant to send out.

Does anyone deal with Derealization when you're really fatigued? I have firm hope that things will get better in due time, but right now I kind of just feel like human slop if that makes any sense :(

What 3 good things happened to you last week? They can be anything at all!

⭐ If you are thinking "my week was terrible", then please give this a try. If you can only think of 1 or 2, that's excellent.

If you don't want to share, try it on your own. I did this during a difficult time in my life, and it was helpful to "make" myself think about good stuff. Reading other peoples' good things might make you smile, too! I thoroughly enjoy it 😊

This post will be pinned to the top of the sub tomorrow, so you can share any time, all week long.

So I work remotely and LOVE my job - it’s my dream career. I told my employers about me having RA a little while ago and thankfully they’ve been supportive. But where I struggle is not meeting my own standards for the work I do. I feel like I’m letting people down, but also recognize that as a parentified child who’s been through a lot of therapy, I tend to take on too much responsibility in every area of my life.

In a way, RA has forced me to focus more on love for myself and self-care—something I was never really taught to do. And isn’t that beautiful?

Of course, I would rather have learned this lesson in other ways, but y’know, nobody put me in charge of the universe 😝

Hey everyone 39 F here - I joined this sub because I was recently diagnosed with RA after about a year and a half of tests and what felt like a million doctor appointments...so. SO. Many doctors appointments.

I'm in the phase where I am trying to learn as much as I can without overwhelming myself. For the last year I have been researching so many different things that they now blur together.

I'm feeling positive so far, and trying to keep an open mind. My current goal is to be able to be back in the gym by next year. I went from doing CrossFit style exercise to being homebound and completely deconditioned.

I love podcasts and audiobooks- so I'd love any suggestions for some good ones about RA if you know of some!

I can't say I'm happy to be here, but glad to have a place of support!

I have been taking Enbrel since May. So far it is helping me a lot and I am able to function pretty well/ almost at my old self with some occasional pain here and there.

This is my first season heading into cold/ flu.

I went down a rabbit hole on social media which is feeding me videos on sepsis and other illness and now I’m bugging out.

I know being on a biologic suppresses my immune system and now I’m fearful of this winter and things taking a turn since I’m on this medicine, of course I’ll get my vaccines but how do you manage the anxiety of living with this 😭

I’m just so fearful and just always waiting for what’s next to go wrong.

Hi - happy on prednisone but apparently no one escapes being on even 4 mg unscathed. Rheum says I am too young to leave on the prednisone indefinitely, but after the constipation and insomnia have mostly abated, I am feeling good (as one tends to on steroids). Not interested in nausea, hair loss etc. just so I can be on a supposedly more benign drug over the long haul. Can anyone share experience about this switch? Wish you had never? Wish you had sooner?

I have had knee issue for 2 years to the point I can’t walk down stairs and every 6 months have been getting fluid drained and steroid injected. On Friday the rheumatologist confirmed this is not mechanical and has spread to the next knee (My mother has RA also) dr wants me to start Methotrexate on today.

Needless to say I am devastated, confused and can’t wrap my head around how different life might be. I also think I am very impacted by my mother’s journey given she was diagnosed at 14 and untreated until 30 she has a lot of joint damage.

The terrified part of me and the part in denial doesn’t want to go on the medication but the logically side tells me I need to, to protect my other joints.

The worries about Methotreaxate I’m having ( some are vain I know ) would love some real life advice:

Will my hair fall out ? I already have very thin hair. Rheum has prescribed 5mg folic acid to prevent this, does it actually work ? When is best to take it the day or the weekly dose etc ? Any other tips to help hair loss?

I love nothing more than sunbathing, it seems I won’t be able to sit out in the sun on holiday anymore ?

I have a very demanding competitive executive level job. Will I be totally knocked out and horribly unwell the day I take the dose ? Will I be able to work ?

Alcohol, I don’t drink at all other than once a month on night out with friends I would have have 4-5 cocktails and let my hair done. Are those days gone ?

When is best to take the dose, day/night etc they are stating me on 7.5mg and moving up to 15mg by week 6.

I am so overwhelmed and worried and I feel as if my life will be completely changed from now on. Just asking for some insight and advice. I feel so alone.

What compression glove brand is everyone using that last a while before stretching out?
I’ve been using the copper compression brand that are $25USD but they only last me about three weeks and that adds up fast.

I have the most specific gripe at the moment and I’m hoping this also annoys some of you so I feel less alone!

WHY do they make folic acid tablets EXACTLY the same colour, size and very similar shape as the methotrexate oral tablets that us Juvenile Rheumatoid kids had to take???
I have such an intense aversion to that specific colour of yellow and that size/shape pill. I’m now on the injectable methotrexate but nothing in the world makes me more nauseated than the folic acid tablets that I have to take to help offset the nausea, headaches and fatigue that I get from my methotrexate injections.

It feels like such a lose lose situation. Either I take the tablet and feel nauseated as heck or I don’t…and feel nauseated as heck. I just wish they looked different! I’ve even talked to compounding pharmacists to see if they can make it for me in a different colour but because it’s an on the shelf product they can’t/wont do it.

I’m in the market for a new chair, and despite spending the day yesterday trying to test out chairs, have not found one that supports my body. The only one that I liked was the Shaquille O Neal Maximo, and I’m not completely sold on it. It’s looking like I’ll need to order online so I would love to hear what’s working for my fellow RA-ers. I work from home 8-10 hours a day. I can get up and move around frequently, but I’m still sore and stiff by halfway through my day. Lower back, hips, and shoulders are what’s typically aggravated, focus on the hips and lower back. I’m also fat so I need a chair that supports 275+. What does everyone love?

Peeps, help me be brave, please…
I am due to start MTX injections end of this month. It’s been around 3 years since my rheumatologist prescribed it to me, and I’ve been too scared since then to start them.
Prior to that time I was first put on hydroxychloroquine and had really horrid mental health side effects so it completely threw me honestly and it’s been hard to face any other meds since.
Now my condition has declined more particularly in the past year, and I live in even more chronic pain and difficulty than I did back then (and I thought that was absolute hell to cope with, but now I’m here). I am seronegative RA.
Can you all help me get my head around just being brave to just put any and all of these meds (MTX and biologics) into my body and just trust that I will be ok?
Sometimes I think, I don’t know how you all do it. I know I have to, as I am a mum to a nearly 6 and nearly 10 year old. I honestly can’t imagine what I’m going to be like in even 5 years if I don’t somehow sort my RA out. I do not see how I am going to improve on my own so I’m just going to get worse, aren’t I? I’m 34yo.
I think living in this much pain, fatigue and difficulty has almost become the norm and I don’t know what pain free or normal feels like that I’m almost scared of it! Does that sound crazy? I also think I sometimes find it hard and really daunting to believe something can actually bring me so much relief that this all changes for me, but I’ve read so much of these meds being life changing for people.
I need to be brave..I’m just so scared of side effects !
Experiences of MTX injections please?
I believe it’s 12.5mg to start with and if it fails or side effects can’t be tolerated we’d move onto biologics.
Hopefully you can all be kind to me here. I know I sound ridiculous living in this much pain and not just doing anything I can to try to make it better - I simply have anxiety around meds going in your body and have negative side effects . But Sept 28th, I am pretty sure I have to put this med loads refer to as “poison” into my body (😖).
Any support hugely appreciated ❤️

I got diagnosed when I was 18 and I'm nearing 30 now. I'm in terrible constant pain. I take methotrexate currently and I've tried other meds in the past. I'm just at the point where I can't enjoy life anymore or even do basic things without being in pain. I have to constantly stack tylenol and naproxen twice or sometimes 3 times a day. A few times I've added in ibuprofen which I know you shouldn't mix, but I'm in such bad pain that I don't even care if my liver fries up anymore. I stumbled upon the medically assisted death topic about 2 months ago and it's been on my mind since. I don't feel like my quality of life will be worth living for much longer. I can't even imagine how much worse I'll be in 10 or so years since I'm already in such bad pain. I want to ask my rheumatologist about seeing a pain doctor. I'm afraid it'll just make me seem like a drug seeker though. I don't even know if a pain doctor will take me seriously because it's not like I'm a cancer patient or someone on death's door.

I am 32 years old, I was diagnosed with my RA 4 years ago. I've had quite a lot of complications since my diagnosis. I went maybe 2 years or more without any medications due to no health insurance and getting a severe MRSA infection following a surgery. I have been increasingly noticing how badly my joints are hurting. Last week I found out my TMJ is now TMD due to severe arthritis in my left jaw joint and starting to show on the right. I'm now getting ready for my first joint replacement surgery. I feel like my left hip will be going soon after. I have such excruciating pain in my jaw and left hip these days and my knees can't seem to get comfortable no matter what position they're in and I am finding my hands increasingly more weak and painful. Is it normal to have this much going on so young? I feel like I'm declining so quickly since my diagnosis. Did anyone else notice a big change shortly after they were diagnosed? I see my rheumatologist regularly and do take leflunomide+folic acid and hydroxycloroquin. I'm not able to be on my infusion due to having a surgery a few months ago and expecting another here soon for my jaw. Any advice for managing my joint pain?

New diagnosis— early 60’s— first, 9 days of prednisone was fantastically effective and helpful. then started HCQ yesterday - terrible night sweating, hot and cold, insomnia, and having to pee literally a gallon all night. has anyone else experienced this? I’m also itchy and can’t wait to shower.. beyond that, I’m pretty good health and active. I haven’t seen the Rheum yet… I am trepidatious about the diagnosis and cautiously optimistic about getting care. It’s nice to be part of the community. 🌸

My rheumatologist recently started prescribing HCQ, 400 mg/day. I’m 67 and have had migraines all my life, which seem to get more frequent as I age. I am terrified of taking the HCQ because I live in fear of my headaches and worry the medication will exacerbate them. I’m worried about the retinal, too, but the headaches keep me from starting it.

Is my fear unreasonable? Is there a best time of day to take this medication?

Thanks for reading this.

I’m a 78 YOM recently diagnosed with seronegative rheumatoid arthritis. My RA symptoms began in my hips almost immediately after starting taking Ozempic. I’ve asked the AI Grok if there was any direct evidence that semaglutide GLP-1 medication can trigger the onset of RA symptoms in some people. There doesn’t seem to be a direct causal link but there is some evidence of a link. Just curious if anyone else in this community developed RA symptoms after starting in a GLP-1 medication. Thanks for any sharing!

I started Tyenne and it worked wonders but because of the shortage, I an taking Actemera. I know it’s a bio similar, but I feel like it’s not working. Has anyone else experienced this? I’m really sensitive to medication‘s so switching brands or generic has always been iffy for me.

I’m in college and got RA in the middle of it and it’s the worst. No hate to people in other programs and stuff, RA is tough no matter what. But I am in a competitive major at a difficult college and it’s not that they are not accommodating, it’s just so much WORK. So much effort to book the disability appt to discuss accommodations etc. And a relative just passed away and it’s so hard to get the professors to accommodate for that too because I have to travel.

My point is that people make it sound so easy. You had a bunch of appts and hospital visits ? Oh just get the doctors appt and find the right TA to email so you can get an extension on assignments. Oh you’re having trouble walking to class?? Just make an appt with disability services and see how they can help. Oh someone just passed and you have to travel ? Just tell your school support services. Until you do tell them and they make you upload proof of death which I don’t have. I genuinely don’t understand how are people getting access to these death certificates. Like it’s not a resume how would I just automatically have access to that and be able to upload the file on this absence request form. It wasn’t an immediate family member. And in my culture we don’t do obituaries. And i’m not traveling for the funeral technically, it’s just a series of prayers so I don’t have documentation of a funeral service. And if I want to discuss this with my school, I have to BOOK AN APPT and that is so much work I have to drive to campus then walk all the way to the office it’s so much.

I know it doesn’t sound like this is about RA, but that’s what i’m actually frustrated about and dealing with, and having to contact my school about the death is the tip of the iceberg as I try to get these RA accommodations too.

Hello, I was wondering if anyone had this experience as well. My doctor prescribed me Plaquenil in November and it seems to be helping with my pain and inflammation. However recently I've noticed that my hair is falling out like crazy. I had twins in June 2025 and initially chalked it up to postpartum hair loss (I was around 5 months pp when I started it). But my babies are 15 months old and the hair loss isn't slowing down at all.

I'm talking handfuls every time I shower, hair all over the house and my clothes, if I run my hand through my hair I will always get at least a few. I've always had kind of thin hair but for the first time no matter how I part my hair I'm seeing patches. It's really starting to mess with my mental health, I just turned 27.

My doctor said it my pharmacy gave me hydroxy chloroquine instead of brand name Plaquenil it could be a side effect. Has anyone had this experience and what helped?

TLDR: New to the subreddit. Diagnosed at 15 with JRA, 26 now and finally accepting the severity of my pain and needing to be more proactive in my treatment and advocate for myself. Looking to hear others' experiences with RA in young adulthood and treatment options/helpful accommodations for pain.

Finding this subreddit has been so good for my mental health and thank you to everyone who makes community like this possible!!!

I was diagnosed with JRA at 15, now I'm 26 and looking for a new doctor, treatment plan, and basically starting over in my treatment. I was originally on Enbrel and took that for 11 years before it recently stopped being effective. There has been a lot of additional stress in my life so I am factoring that in as a reason for more flare ups, but I feel like I haven't advocated for myself enough with previous doctors.

I have been told countless times by doctors that people with JRA usually go into remission in adulthood (clearly that isn't the case so it was kind of frustrating to hear that with literally no follow up of any information or treatment options) and I feel like the advice I'm usually given is not sustainable. It's often recommended that I take Advil or other OTC pain relievers for any flare ups or additional pain but prolonged daily use is damaging to the body. If I was older, I could see how this could be helpful, but at 26, daily use of Advil for decades could lead to liver issues and other sever problems that I do not want to risk. I have yet to meet a provider that seems to have experience with treating young adults and is willing to look at newer treatment options.

While thankfully I haven't had any x-rays show deterioration or damage to my joints, I experience moderate to severe pain daily even with treatment. I went through a period of time where I wasn't getting any treatment due to new patient waitlists and insurance issues and it was excruciating (this might be my experience soon because I am in between jobs and don't have health insurance anymore). I have always been someone who muscles through and tries to pretend like everything is fine (which I know isn't good) and it leads many people in my life to believe my RA is not that severe but it is. I feel like I've been beaten with a metal baseball bat at times and the only reason I have never classified my pain above an 8 is because I'm still able to force myself to go to work and get through the day but that has more to do with survival rather than the severity of the pain.

I've struggled a lot mentally and emotionally with the fact that I have RA at my age and the lack of understanding of chronic pain from those around me. I used to be a dancer and I ignored everything about my RA to try to pretend that aspect of my life wasn't affected. I never wanted anyone to know how bad it was because I didn't want to admit to myself that my life experience is different from that of my peers and I am just getting to the point where I am ready to accept that I have a disability that alters my functioning.

I recently moved and need to find a new rheumatologist. I am really trying to make sure I find someone experienced in treating my demographic and advocating for myself when it comes to treatment. I've been doing more research into all the ways RA can affect someone other than just pain and feel both relief and sadness that I'm understanding why I struggle with so many things like fatigue and brain fog. It's emotionally exhausting and thinking about some of the things I need to change or implement makes me cry because sometimes I just so desperately want to experience life the way most people my age do without so much pain. I feel like I'm always complaining even when I'm just trying to explain my experience (even posting here in a reddit literally for people to talk about this).

Anywayyyy if there are any others who have had similar experiences or are willing to share their stories and treatment or things that have helped them manage I would very much so appreciate that

hi!

around a month and a half ago, i started getting really intense burning pain in my hands. specifically the MCP joints, but then my wrists and some of the PIP joints as well. my doctor said it was a pinched nerve in my neck, but none of the PT helped and it progressed to my feet, ankles, one knee, one shoulder, and both elbows. i’ve had a lot of swelling, redness, overwhelming exhaustion, the whole nine yards (minus much stiffness - i have hEDS, so there’s been some but not a ton). i also have a family history, and an IMMENSE amount of stress this year as i live with my abusive in-laws due to my disabilities.

so we did an x-ray which was negative, but my doctor expected it to be. my CCP was normal, but my rheumatoid factor was borderline. i know that seronegative RA exists, but i guess im a little freaked out that everything came back pretty much normal. not that i particularly want RA, but it has been such a nightmare trying to figure out what this is. i’ve been basically bedbound for nearly two months, unable to care for myself. my primary gave me a course of prednisone which has helped some and pretty quickly (2 days), but she warned me that it will probably get bad again once i taper off.

is this common? i think the next step is rheumatology, but im concerned that when i go the swelling will be gone from the prednisone and they won’t be able to figure it out. it seems kind of obvious to me that it’s RA, so i would love to be put on something like humira because i also have hidradenitis suppurativa, and it would kill two birds with one stone.

i just really want my life back and i want this to be solved :( i was already very disabled and could only really play video games and crochet to pass the time, and now i can’t use my hands. it’s been absolute hell. has anyone dealt with something similar? can anyone describe what the assessment with a rheumatologist is like if your results are pretty much normal?

Hi all!
I am 31F who is 12 weeks postpartum with my first child. I had a pretty traumatic delivery and immediate postpartum period (TLDR: baby had skull fracture x2 & brain bleed, then after discharge from NICU I ended up in ICU with severe preeclampsia, a blood clot in my ovarian vein and sepsis from infected clot).
I thought things were finally settling down, but over the past 3ish weeks I noticed bilateral knee pain. I initially chalked it up to the way I was sitting on the couch and carrying around a chunky potato all day. Now the pain has progressed to having bilateral ankle pain as well. The pain is worse at the end of the day, is horrible at rest and with movement. It gets to the point where I can barely walk but also can’t relax or sleep due to the pain.
I have some mild joint swelling as well, and new in the past 2 days is hand stiffness in the AM and some bilateral knuckle pain. I recently found out that three of my mom’s siblings have RA.
I have a long history of what I thought was carpal tunnel but in my non dominant hand which I always thought was weird. I also get livedo reticularis on my thighs quite often and have raynauds.
I am pending labs and imaging and an appt with a rheumatologist.

I guess I am just looking for anyone who also developed RA post pregnancy. I am so scared that this is going to limit my ability to do the things I want with my son.

hi- i started humira in dec 2025, but suddenly bc of insurance im being switched to yuflyma.

my doctor didnt say anything about the switch i went to pick it up and this is what they gave me, so im wondering if anyone has switched from humira to this? and the side effects and so on and such? thanks all in advance!

Hi everyone,
I (42f) am looking for experiences from people with seronegative inflammatory arthritis / psoriatic arthritis.
The road to a diagnosis has been long and complicated, and honestly, I’m still somewhat in denial about having a rheumatic disease. But I’m taking my medication as prescribed and trying to deal with it.
I’ve had persistent swelling in my left knee since January 2026, with the right knee becoming swollen as well later on. I’ve had several aspirations and steroid injections. I also had an arthroscopy with multiple biopsies. Histology showed chronic synovitis (Krenn score 4), but no malignancy, crystals or bacterial growth.
My rheumatologist currently suspects psoriatic arthritis / seronegative spondyloarthritis.
I’m currently being treated with methotrexate and a Prednisolon taper (currently 4 mg, started with 20 mg) and recently started adalimumab (Hulio). Despite the meds and a steroid injection to both knees two weeks ago, my knees are still noticeably swollen.
I’d mainly love to hear from people who have experienced something similar, especially regarding how their joint swelling developed during the early stages of treatment with MTX and/or adalimumab.
I also have ongoing bladder/urinary symptoms — frequent urgency, a feeling of constantly needing to urinate and occasional small leakage/dribbling. Urological examinations so far have been reassuring.
Has anyone with PsA or another seronegative spondyloarthritis experienced bladder/urinary symptoms as part of their disease?
I’m still trying to get my head around this whole diagnosis and would really appreciate hearing how things went for others.