r/rheumatoid

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.☹️

I find that THC has helped me a fuck ton with my RA. It doesn’t dull the pain the same way steroids do, but it makes my joints significantly less rigid and stiff.

My issue is that I try to avoid anything that I have to inhale since my injections (DMARDs and Biologics) have a side effect of lowering my immune system, since the disease is, in a nutshell, an overactive immune system, and that’s one of the only true ways to combat the symptoms.

To anyone that has RA and uses oral methods, what’s your personal favorite that also helps the most? TYIA!

This has been discussed but I would like to know what other meds work for pain management besides cbd/thc gummies/smoke and opioids. I have limited mobility so working out or exercise is limited.

Dr prescribed Gabapentin for body aches during a flare in addition to prednisone? Was this helpful for anyone ? No fibro diagnosis for me (yet?) it seems to help more than prednisone - wonder if this means fibro or just part of my brain perception of RA ?

I'm sometimes at a loss to describe my symptoms to my rheumatologist, and I think one of them might be "pain guarding".

I wonder if others of you have a similar issue and how you talk with your rheumatologist about it.

My RA joint swelling is finally pretty well controlled with biologics (Orencia) and Hydroxychloroquine, but my fatigue and muscle pain are a real distraction.

When things are bad, I climb stairs very slowly, walk hunched over, take forever to bend down and back up, and do whatever I can to avoid unexpected jerks: like very carefully opening sauce packets for fear of pain if the packet tears unexpectedly. I can't really place the pain during these bad days as it's kinda all over.

I tried talking with my awesome rheumatologist about it, but she tried testing me for MS instead. I guess I shouldn't have used the word "stagger" when talking about my mornings.

AI thought that these might be "pain guarding" symptoms, but I haven't heard that term used before.

Does anyone else experience symptoms like these? What do you do about them?

Thanks.

I've (37M) been dealing with pain around joints all over my body for ~3 years and my PCP hasn't really be doing much to try to diagnose it so I started booking my own blood tests ~2 years ago.

My RF has been elevated (200-400) for at least those 2 years and hsCRP has also been elevated (2-5). I asked to get a referral a while ago just based on those tests + the symptoms but they did sed rate, ANA and their own hsCRP and they said those came back normal so he couldn't give me a referral.

More recently I ordered my own test for CCP and that came back >250 which I figured would be enough to get a referral based on what I've read (something like 95% of CCP positive=RA?). I went back and he ran some more blood tests to rule out things like lupus and sjogrens and sent me for an xray on my hands because 2 of them have had swollen knuckles for a while. Their office called me twice to let me know that I for sure do not have RA and to let them know if I want pain killers to deal with any pain. They don't seem very interested in trying to figure out what the problem actually is and how to fix it if it's not RA, which really annoys me.

It started by happening to 1 joint at a time (and maybe once every couple months) but more recently it has affected multiple joints at the same time and very frequently. It sounds like palindromic rheumatism to me but obviously I'm not a doctor. I'm currently looking for a new PCP to try and get a referral, but was wondering if that is even worth the effort. Am I crazy to think that with the symptoms + high CCP I should at least be able to get a referral?

Excuse my ignorance.

Let’s say I’m feeling like crap (pain stiffness)and my rheumatologist tells me to take a pill and I feel better, does that more or less mean it’s a flare up?

I'm looking to get a good knee massager. Does this help with discomfort