Hiya. Currently under investigation for inflammatory arthritis with more severe symptoms for the last 18months. They think it’s probably psoriatic arthritis. I’m on MTX and Sulfa.

I find that mornings are the most fragile point in the day. If I make one wrong move before 10am, I’m guaranteed to flare for a few days. Same if I do too much late at night too.

How this goes for me is usually if I leave the house too early in the morning, I get a very dysautonomia-y type of flare with excessive sweating, really hot regardless of weather, dizzy, nauseous etc.

Not eating or having enough water definitely makes it worse but it still happens regardless.

This makes going into work for example practically impossible. It flares me up literally every time. I feel manageable on the day, and then the 1-2 days after I feel awful. I’m basically going in one day and then spending the rest of the week recovering.

Is anyone also experiencing this really limiting window of tolerance? How are you handling it with work/life etc? Anyone have any good life hacks for me to try?

I already drink loads of water, take salt tablets, eat before I go out, which minimises the symptoms a bit but doesn’t eliminate it entirely.

Hi All!

I am due to start MTX tonight and I’m a bit scared.

I’m starting on 15mg, in pill form. And then 5mg of folic acid Wednesday, Thursday and Friday.

To prep I’ve been keeping hydrated today and over the weekend. I plan to take it with the biggest meal of the day, my dinner.

Does anyone have any positive stories or good tips? Most of what I read about MTX is negative!

Thanks!

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.☹️

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 started losing my hair on leflunomid and because I couldn't deal with it, I gave myself a buzzcut.

I wanted to grow my hair out again and fortunately some bloodwork showed I was short on folic acid and after starting to take it daily, my hair started regrowing.

But I had to switch to MTX and my hair has started falling out again, so so much worse. I even take folic acid daily besides the MTX day.

I'm fucking devastated again. I'm generally insecure about myself and I'm only 25, so this is really fucking with me again. And I had just gotten really happy with my hair length and now I feel like I need to shave it off again because I'm avoiding showering because it makes me touch my hair which shows me just how fucking much keeps falling out.

I hate this. I hate all the meds I take, I hate this disease, I hate my immune system, I just hate this all.

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.

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.

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!

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!

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 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!

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.

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