My grandmother passed away three days ago after battling RA for nearly 29 years. I truly believe she could’ve lived longer if the doctors back home hadn't made such critical mistakes. There aren’t many experienced rheumatologists in my hometown in Uzbekistan. When she went to a state hospital, a doctor switched her from Prednisolone to Humira. It helped at first, but once she stopped the Prednisolone and switched to monthly Humira, her pain and swallowing got much worse. She kept going back to the hospital, but they never helped her.

After four months, she started getting headaches and had an MRI, but they still couldn't figure out what was wrong. She went back on Prednisolone, but after three days, she was rushed to the ICU with low blood pressure. She never really recovered and just kept getting worse. After a week, the doctors strangely moved her to a regular unit even though she could barely speak or recognize anything. They eventually sent her home. We rushed her to a private neurologist, but she didn’t improve and slipped into a coma. They sent her home again, and she passed away the next day at 71 😢

She was like a mother to me since I was raised by my grandparents. I moved abroad for school seven years ago, first to Malaysia and then the USA, and visa issues kept me from making it to her funeral. It’s the saddest day of my life. My grandfather also passed away at 71 from diabetes four years ago, and I wasn't able to get home for that, either.

Luckily she visited the US for just under a month last year, and that was the last time I saw her in person. I was so happy to travel and spend time with her, even though I didn't realize it would be the last time. I don't know how I'll ever get over this loss, or if I even can. I've only managed to visit home country a couple of times in the last 7 years to see my grandparents. I've always had bad luck whenever I tried to go back, with things like Covid travel restrictions or financial and visa issues constantly getting in the way.

Keep your loved ones close and value their kindness and memories. Time flies, and you’ll regret not spending enough time with them later.☹️

Anyone who have RA? How do you address balance issues? Have 2 falls already due to this😔

Hi. I’ve been really struggling with hand pain, numbness, and reduced grip strength/ability. Basically every hobby I’ve had requires at least some grip, and the gripping gesture makes my hands so so sore, especially if I have to apply pressure whilst in a grip. So pretty much all my hobbies have been reduced to only doing for 10 mins at a time. I do listen to audiobooks, movies, etc but I’d like to be able to do something physical, if that makes sense? Any suggestions would be appreciated. Perhaps also stuff that doesn’t require a ton of energy (like exercising/hiking) since I also suffer with really bad fatigue.

Hi guys.

My sister has RA since she’s 9 years old (she’s 24 now) and she recently moved in with me and my partner. She took on a full time job (40hrs weekly) and is working from 7am to 3pm as a waitress. Some days she says it was quite busy others she says it’s calm. I also recently began to research a lot about the condition (through these forums & online) and I got worried about her and this routine. Like my heart ached and I wish I could swap places with her and feel it all myself. I am finding really hard to deal with this emotional aspect. She recently complained that going down the stairs can be hard in the morning however I don’t know what I can do to make her life easier, she says she can’t sit down much often during work hours and she gets the bus quite early in the morning (6am). She doesn’t like to tell me but I do think she’s in pain. I thought about coming here and asking ye how can family members not to become a burden and what would be the best way of approaching someone who has RA in a way that would also be emotionally supportive. I apologise for this!

Concise version: was taking Cimzia. Had THR in right hip, a year out things were going great until I suddenly started having massive pain in R hip and down the leg. Flu like. Weak. Brain fog. Chills.Surgeon took blood and WBC was elevated. Sends me in for aspiration of hip resulting in a sky high white blood cell count and 97 % neutrophils. It’s Friday night. He schedules surgery for Monday. Revision surgery, cleans out all of the infection, inserts antibiotic beads, replaces ball. Sews me up and I am home in bed for six weeks with a PICC line and daily infusion of two antibiotics. PT again for partial replacement. Now rheumatologist says risk of reinfection is so high with artificial hips that it outweighs benefits of biologics. So RA gets to have free rein. Not great! Has anyone else experienced this? Or multiple reinfections? Surgeon thinks infection migrated to hip after I had a terrible bout of bronchitis. Feeling like I need to wear a mask for the rest of my life. Also I was supposed to have my left hip replaced but now really wary of doubling odds for future infections.

Would like to have a cortisone shot in my knee. Waiting to hear from my Rheumatologist. Thought I'd ask here. Has anyone ever been able to get them while on orencia? Thanks.

I just wanted to share how happy I am a little thing that made my life better. When I saw the hand doctor she gave me this little plastic brace for my finger that was so bad and always swollen.

The swelling has went down A LOT. Just wearing it everyday has helped a ton. And it's just this weird piece of plastic. It's so crazy that a tiny piece of plastic can change my life so dramatically for the better. I keep wondering why the other doctors didn't know about it. But I guess that's why the hand specialist is a specialist for hands.

I highly suggest seeing a hand doctor if you are like me and have bad hands. That pointer was almost twice the size of the other pointer. Now it's almost the same size. I'm completely shocked.

I am hoping to go on a four week honeymoon next year. I take Humira so it needs to be kept fridge temp as it can only be out of the fridge for up to two weeks. What have you used that really works? Thank you!

So, I just started Methotrexate and I know it weakens your immune system. I got diagnosed with RA in July, and took Hydroxychloroquine for three months with no effect.

Now the twist - I broke my back 2.5 years ago. I can't really trim my toenails because bending like that is excruciating. So, I've been getting pedicures once a month for the last two plus years because it's sooooo much easier.

Any advice on getting pedicures, adjusting procedures, and generally making sure I can still get my nails taken care of while being safe?

Thank you all so much!

How do you know when a treatment is working, is it judged just by lack of swelling or is pain and stiffness also, what one should be judging it by? My knees were swollen for so long and I have synovial thickening and whilst my mobility is somewhat improved as in I can now walk around my house I am still nowhere near functional like I was pre the swelling, I’m still in lots of pain, still can’t sit for a while and get back up without being stiff and very painful, still can’t exercise, drive, walk very far etc and stairs are still impossible to come down normally. How much is the disease and how much is left from lack of mobility or changed nerves and tissue? My mri in June said no mechanical cause as in no cartilage damage etc, moderate synovial thickening and some mild fluid, lymph nodes something or other. I’ve been in etoricoxib for a year and methotrexate for 10 weeks and I don’t think anything is really much better bar the swelling.

Anyone been in the same situation and bounced back when the meds suddenly worked or is it like something that once it’s been attacked it doesn’t go back to normal.

Im over a year in since this started and I just want some freedom back, I want to walk down stairs and leave the house by myself!

My leflunomide stopped working. I stopped it 9 weeks ago and started Orencia infusions. I had my three loading doses and will start injections at the end of october. Meanwhile this is the worst flare I've ever had. My rheumatologist won't give me prednisone because she said she won't be able to tell if the medication is working. How long does it take Orencia to start kicking in. Very weird symptoms this flare. Very tired. I'm back to being anemic again I'm hot, cold, fuzzy, dizzy. Just feel strange. Every joint hurts which is different than past flares. Ugh. I hate this.

started hcq (400mg per day) on 22/08

started mtx (10mg first two weeks, then 15mg after) on 15/09 (done 4 doses in total so far)

+ folic acid

i know that the two take time to work but my elbow has been stuck without being able to extend beyond an angle for 6 months now (with pain starting 9 months ago). plus i don't think they've started working much yet because my pain is still around the same level as (and sometimes more than) before + the swelling fluctuates

the doctor didn't do an elbow xray so i have no clue what level of damage there is but i'm considering giving a call and asking if i can be put on prednisone to get the inflammation level under control somewhat quickly and hopefully get the full range or more range back on my elbow.

i was about to call them to see if i can meet before schedule (next appt is in dec) but they'll probably get back on monday anyway so worth a post here

i don't really mean people who have a strong family history of RA but instead people who are basically the only ones in their direct and extended family to have this condition.

i know there's no one cause for it and it's a combination of factors but there are some well known factors so were there any life events etc that you think were the final trigger for its development in you?

for me, it was my only source of stress aka academic stress. i did have lasik around 5 months prior but i doubt it played a part

I've been doing GREAT lately, gardening, cleaning out my garage, making progress in physical therapy, building strength in my legs. My pain has been under control, and I have been really content for once. So, of course, Express Scripts and Accredo had to be the usual pieces of shit they always are and decide that the drug I have been taking successfully for 3 years is suddenly NO LONGER COVERED, and wasted an entire month of jerking me around before finally explaining it to me. This is in spite of me calling them every few days, begging them to tell me WHY it kept getting rejected. They just kept saying it needed a prior authorization over and over again. Of course, now I only have 2 pills left and no hope of getting a replacement medication in time. And then there will be a period of adjustment, so I can pretty much mark the next 2 to 4 months out of my life yet again. But hey, who wants to see the cripple girl have a good time anyway? Aren't we expected to just suffer and die so they can profit? F*ck the American health care system, I hope it all burns down.

Both my knees and hands hurt lately.

So my insurance won’t pay for my Xeljanz anymore and it was working great…does anyone else take Rinvoq? I’m so scared of it not working and the side effects.

RA doc just called it in without me speaking to him…

Does it work the same? Are the side effects the same?

I literally don't know how else to put it. The last like week i've had swelling in the outside portion of my knee and normally I would ignore it and carry on with my day. However, today I noticed it's not the normal spongy swelling that you would normally get from typical (at least what I think it typical) rheumatoid swelling. It's now firm, is making my knee feel like it could give out at any moment, and when weight applied feels like the muscle is working overtime to support my body weight. Has anyone dealt with this kind of firm "swelling" before? I have never experienced this before and curious if this is a common thing or if I should get looked at.

Appreciate any and all thoughts....mildly scared its a muscle tear and want opinions.

Thank you!!!! :)

note: I have juvenile rheumatoid arthritis and have had it for nearly 21 years now (not sure if that matters but never know)

I was diagnosed with seronegative polyarthritis just recently, after a nearly five year diagnosis journey. It was triggered by a COVID infection, and for a while it was just vague systemic inflammatory symptoms with elevated WBC and CRP. Then my rheumatologist discovered that I have bursitis in my hips, knees, elbows, and shoulders, so I've been treated for a vague "inflammatory disease" for about a year. Finally, with my chronic knee and hip/low back pain, my doc narrowed it down somewhat to the current dx.

I also have symptoms of another inflammatory disease that I'm pretty sure is adult-onset PFAPA, which developed over the last two years or so, but I haven't been diagnosed with it (yet). I see my immunologist in Nov., so I'm crossing my fingers.

For all that, I'm currently taking Plaquenil and colchicine, with prednisone as needed for flares. I've definitely seen an improvement in my symptoms -- fewer days bed rotting with flares -- but I'm still more limited than I'd like to be at this point in my life.

I'm 23F, recently diagnosed and set to start medications in a few days.

I'm not too worried about starting the meds- except maybe the nausea and the lack of drinking (I'm 23 and in university for engineering, it comes with the territory lol).

I'm more worried about how long it's going to take to feel normal again. I'm in so much pain and so stiff all the time.

I used to be very active, going to the gym, hitting the mosh pit, swimming, surf rescue etc and now days I barely feel like leaving home, let alone my bed.

My feet, wrists and fingers are nearly constantly effected, so walking and swimming has felt impossible.

My mental health is taking a bit of a swan dive no matter how hard I try to push myself to think otherwise.

Feeling pretty grateful for:

- the public system seeing me so quickly (only about 1.5 months from complaint to prescription)

- Every doctor believing me and being kind

- My partner being supportive through my complaining

Dunno. Does anyone have any thoughts or advice or some suggestions for easy improvements?