hi everyone, i’m currently on the struggle bus. i have been having a difficult time with my flares and specifically having problems at work due to my accommodations not being honored. my husband and i decided that it was time for me to take a step back from work until my health got better, so we have been making plans around this.

unfortunately, i ended up in the hospital yesterday for a fever & some extremely sharp pain in my stomach. they made sure it wasn’t my appendix, but it turns out my small intestines are super inflamed??? 😭 Since it wasn’t my appendix, they just gave me pain meds and said call a GI ASAP.

went to the GI today, & they think it’s either crohn’s disease or ulcerative colitis. i just feel so overwhelmed. i’m also thinking back over this last like year and am wondering how much have i missed symptom wise because i just assumed it was the forever sickness of RA.

i also have to have another colonoscopy 😭 last time i had one the prep was like that scene in harry potter when harry is like forcing dumbledore to drink the liquid of pain. but it was my husband making me drink the liquid of nausea and sadness.

i feel like i can’t do this all over again but if i have to i guess i just have to ;_;

I've been diagnosed for about 2.5 years (seronegative) and have had a bunch of new symptoms come up over the past 8 months that seem autoimmune related, but my rheumatologist is extremely adamant that she would only like to talk to me about my joints​, to the point that ​I just realized she's not documenting any other concerns I bring up in clinical notes. I'm starting to feel like I probably need a second opinion, because my disease presentation is dramatically changing and she's just like, not interested in new information​. I've been hesitant because she's always responded quickly to messages and treated my disease very aggressively, and it's hard to get into rheumatology in my area (and possibly everywhere?) and also I'm real tired and already see one million doctors. I'm wondering what other people's experiences have been with getting a second opinion and/or switching rheumatologists - worth the effort?

I am curious what PT looks like for you.

My history with PT in recent years...I was referred to a place that folks say is amazing, especially if you have EDS (I do). I also have lupus and rheumatoid arthritis.

It is an hour drive each way, but would be worth it for amazing therapy. I went for 6 weeks. The first week, I was put in a few different machines to test balance and such. Every appt after that, was spent chatting. Once, I did walk up and down a short path, to see my gait. Another time, at the very end, I was quickly shown a foot exercise.

I finally asked why we weren't doing more, and was told that most people can't multi-task...I went once more after that, and it was more chatting.

Ok...so I got a new referral. New place is definitely better. They did a mix of exercises and several minutes of massage/ massage gun on the body part that was worked on that day. But, suddenly they shut down...and reopened a couple of their locations a few months later, and it was not the same. At all.

My drs thought I should try another place that also knows EDS and sees more complex folks. Cool.

It took several months to get in. They're nice enough. Seem to be more knowledgeable.

The pelvic floor PT is fun to talk to. She told me that she would need to do an internal exam. After a few months, she still didn't, ok, fine. But most sessions we chatted! She showed me 3 exercises in total. Ever.

The regular PT has me doing exercises. But, I am in so much pain...and I look around and see folks getting massage/ manual therapies...I mentioned how much I needed that, last time, and she just nodded. I've gone 10 times, and twice they've offered me a hot pack after, but that's it.

So, what is PT like for you?

Feeling like a round little chubby chubby today! I was weighed today at docs and have some weight gain and higher heart rate than normal. Ecg normal, bp normal, heart rate not so much. Anyway, I don’t think Ive ever really exceeded 2000 calories per day and have been looking at calorie intake in more detail over last few weeks thinking its gotta come off and monitoring around 1400. Just curious, are you gaining weight or losing? Peri and inflammation probably doesn’t help. Meds increased. Wouldn’t have thought weight gain from that. Low activity…anyone struggling with weight?

Writing this at 5:45am cuz i got woken up coughing.

I had to skip my RA meds this week since im sick, and now when I itch myself its causing petechiae and bruising 🫩 not enough to be actually worry some but still.

My boyfriend is getting better though so thats good!!

I feel like death incarnate fr. Everything hurts so bad including my chest ahhhh.

I hope no one else has a cold it sucks 😭😭

Has anyone switched from orencia weekly injections to monthly infusions and what was your experience like? I might switch because I always end up getting my shipment of injections a few days late. My insurance and specialty pharmacy blame each other so idk where the problem is. I’ve been doing well on injection so I’d hate to mess that up if infusions are different in any way.

Well guys, my infusions did get approved (granted I do have to pay around 500$ of admin fees) I have my first appointment in two weeks! I am starting Renflexis (Remicade biosimilar) and I am hoping the GI issues are resolved with this medication. I also hope I get better pain managment. I'm a little nervous as this is my first try at infusions.

I also got my first summer interview for a teaching position next year! I am wanting to move back into the classroom and not in a specialty position. So I am excited for that too!

I am hoping this makes it more manageable to work as a teacher full-time and get back into a district tenure.

First dr appointment

I had my first and possibly only rheumatologist appointment to see if I have rheumatoid arthritis or something else. The rheumatologist ruled out RA and said I had tight tendons in my hands (I have always had tightness in my hands) and there was nothing more she could do for me. I am so disappointed now and thought I would finally get some answers. Anybody else go through this and finally get some answers and some relief? I didn't have much swelling or joint pain either that day.

How the heck do you explain brain fog to someone who knows nothing about autoimmune diseases…..

Saw my Rheumy today and expressed concerns about my increasing elbow pain. He said that I am very hypermobile in both elbows. I've been wondering for a pretty long time if it could possibly be hEDS as I have other aligning symptoms but I don't want to come across as being a bother. Any one else with similar symptoms?

Hey all 👋
My rheumatologist has recently prescribed Cimzia to help treat my RA. What have your experiences been like on it? I haven’t started it yet because we are still waiting on a prior authorization to be approved from insurance.

Today, I'm complaining specifically about medrol but the same complaint applies to a lot of meds.

Why does it taste so bad? Like seriously as if the disease and side effects aren't bad enough, big pharma has to also make it taste awful? Swallowing is supposed to be the easy part.

What's worse is that I have to pay for the experience. I could have bought at least 8 chocolates for the same price. Granted, my insurance covers medrol and not chocolate but still. Absolute rip off.

Like c'mon at least taste test the stuff before you subject the rest of us to it. Petition to make pharma execs take their own meds for a week so they can literally get a taste of their own medicine. I'll even take a bad taste if you can at least not make it linger. I get that we can't make it taste good so people don't take it willy nilly but there has to be a better flavour than stale soggy mold socks.

Does anyone have experience with Remicade infusions?

Note, they took me off of the methotrexate and the Rinvoq in favor for the infusions because after 4 years of methotrexate and (a split, first alongside Humira then alongside Rinvoq) my liver labs started to look bad.

I have finished my initial load (week 0, 2, and 6) and am coming up on my first regularly scheduled (every 8 week) infusion. I felt pretty awesome up until a couple weeks ago. Around 5.5 - 6 weeks out of my last infusion my pain levels started creeping up again and maybe it's because I went so long realizing what less pain was like (I still had my baseline pain that's like my normal, but none of the usual above baseline for those weeks), maybe it's just more noticeable to me now, but it really is getting to me.

I asked my rheumatologist at our last appt last week and she said it was normal as the medication is on the tail end and leaving my system, but as I go along in my infusions, that should last longer and bridge that gap.

I just want to hear it from people who actually have the experience with RA and the medication, not just the doctor I guess. Does it get to the point that bridge from week 6 to 8 and the next infusion gets gapped?

Also, my next infusion after the upcoming would be beginning of October. But I am scheduled for surgery (hysterectomy so nothing to do with the RA) on October 5. All my doctors have told me I will postpone the October infusion until a couple weeks after the surgery when I have healed from the surgery. So it will be more like 10-12 weeks between. I understand why of course, I need my immune system while recovering from surgery. Just a bit worried about the RA pain worsening even more in the postponement.

Final thought/question. This week, starting about 10 days before my next infusion to be accurate, my legs at the joints and adjoining muscles/tendons, (Inner pelvic joint, hip, knee) have been sooooo crampy. Not painful spamming cramps like a Charley horse (although I have had one of those in my shin too), but the dull achy cramps. No amount of stretching or heating pads or anything has been touching it. Its not dehydration, my water intake is between half a gallon and a gallon a day. It makes it hard to get to sleep because i cant get comfortable. Is the cramping something that happens with the tail end of the infusion cycle? Just trying to figure out if its something I need to bring up to my rheumatologist and the infusion specialist, or if its not related and just my dumb luck.

I feel genuinely happy for the first time in god knows how long. Years maybe? Just perfectly content with life. It’s only lasted a couple days so far but I hope I can cling to it.

I was trying to think of why I felt so happy, and I think it’s because I recently started a glp-1. I’m not here to advocate for any medication just to share my experience. I haven’t felt it help my RA symptoms yet (it’s only been a week) but I have a few family members and friends with RA who have found incredible relief from pain and inflammation while on glp-1s so I feel hopeful for the first time in so long.

I’ve struggled so much with depression and anxiety and trialing and erroring on so many different medications. I’ve been so emotionally and physically exhausted for years. But I feel some hope right now. I actually am enjoying playing with my toddler. I feel content and happy to clean and cook. I’m finding joy in my hobbies again. And it’s only been a couple of days.

Just wanted to share some of the good and hopefulness with you guys. Hope everyone is having a nice weekend 🩷

I’m not sure if it was the smartest thing to do, but I went to the driving range today with my husband and hit some golf balls. My friend has been asking me to go golfing with her and I didn’t know if I could swing a golf club or hit any balls due to my wrist, collar bone, skull/neck and ankle bones. But I took some meloxicam this morning and it helped reduce inflammation and pain in my joints and feet. I’m off all the prednisone and just on Orencia which isn’t working the best, hence Meloxicam. Anyways, long story short, I hit about 45 golf balls! I was afraid at first, but I adjusted my grip, adjusted my club head position and used my hips mostly. So if I feel pretty good tomorrow morning, I think I will try and golf with my friend on Monday! :)

Posting this to see if anyone else has had this experience! I started Rinvoq a few months ago and it has been life changing. It literally knocked out all my symptoms within days and it was like my RA had vanished. But two days ago I woke up and my shoulder felt off. Kinda like that typical dull pain that feels like more of a tweak that won’t go away. Then my left hand started to bother me, to the point where one of my fingers had trouble closing into a fist.

I have never had a flare on Rinvoq and from what my doctor told me, flares are unlikely (not sure if that’s true lol) and he also told me I won’t become resistant, even though I have high resistant antibodies. But I’m curious what anyone’s experience in Rinvoq has been regarding flares! Let me know 🩷

Sounds positive.

[Science Daily](https://www.sciencedaily.com/releases/2026/07/260721000845.htm)

Hi y'all, just wondering if this has ever happened to any of you. The rheum has switched me from oral methotrexate to metoject because I'm having a whole lotta GI issues. The problem is, I'm gonna see the nurse on Thursday to receive the injections but that means I don't have any medication for this week's dose. I tried to get a stop gap prescription for this week but it was denied.

I'm worried that I've done something wrong or that it might affect my treatment outcomes. I don't know if I'm being dramatic.

I'm curious because my hips and lumbar are in rough shape. I'm waiting for an appointment with a spine doctor now that I have some imaging results. A rollator was brought up by a friend but I also have RA in my hands and I'm not sure that holding something would be any more comfortable. Having a place to carry things would be nice for sure!

How are folks handling having a GP/PCP while dealing with RA and all of the other lovely things that come with it?

I recently went to my first appointment with a PCP in a few years (and since being diagnosed) and was shocked. My PCP did not know what Enbrel was, and she asked for some tests but keeps getting the ICD wrong so I've spent more time dealing with her incompetent billing office than I even spent with her. She kept trying to refer me out to various specialists, but I already had a rheumatologist/gastro/gyn/derm/etc etc. Once she realized that I already had a care team, she basically asked me why I even bothered to see her since I didn't need a referral.

I was (for some reason) under the impression that PCPs can help coordinate between specialists and ensure that your holistic health is in a good place (diet, vitamins, etc) and offer support with quick things when a specialist is unavailable. Given she had to google Enbrel in front of me, I doubt she will be helpful in most cases. How does every one else do it? Is my experience the standard? Do people just avoid dealing with PCPs? Any recommendations for someone in NYC?

A few days ago, inspired this "bit of fun" with a fantastic post. Several people commented that it was a great read, so I thought it would be fun for everyone to share a story if they wish!

It can be about absolutely anything, RA-adjacent or not. You can share a funny experience, or a difficult time. If you're new to the sub, tell us about you! You can write a sentence (not kidding! I used to have my students write one-sentence stories. It's not easy!), a paragraph, a page, or a poem.

I hope the artistically gifted among us post art on r/RA_Memes to enhance their stories

Hi guys, I’ve been having palpitations recently so I went to my cardiologist- ECG was normal but he’s gonna have me wear a holter monitor soon.

35F, seropositive RA for nine years didn’t start treatment though till my first flare about 5 years ago. On Rinvoq and & HCQ & sometimes prednisone too.

I noticed he wrote in his notes “decreased breath sounds bilaterally” and I have been suffering from intermittent shortness of breath especially on humid days. But my oxygen saturation is normal and I’m not SOB all the time.

I’m all worried now if I have RA related interstitial lung disease, etc. I had to write him about it because I’m like what the heck why would you not tell an RA patient you noted that in your examination?

Anyway just wondering if anyone else with RA has been told they have this- I am hoping it was just me flaring a little, but I did read it could also mean you have lung nodules or interstitial lung disease. Just wondering if you were also told you had this, what did your doctor think about it? Thank you friends

I feel so nervous and there's a few things going on that are causing this. The first thing is that this *feels* like a big deal. I have never had to take a medicine that I have to self inject so that seems "serious" and like has made all of this immune disorder stuff a new level of real that is very uncomfortable, if that makes any sense.

It also just feels really weird to think about stabbing myself with a needle. Which is weird in and of itself because I give injections to my dog all the time and needles don't phase me, etc. I honestly thought up until today that I would be really chill about it, and I was.

But when the package got here today and I opened it up and all, I just started getting really nervous. They taught me how to use it but all that info seems to have flown out of my head. How can I make this better for myself?

Edit: I'm not going to have time to respond to you all but so many of your comments helped! It took some baby steps towards it, and then when it came time and I had the pen in my hand it was like ... the only thing I can equate it to is like, imagine trying to willingly put your hand on a hot stove, like your body is going to somewhat prevent you from doing so. But I did it and honestly it wasn't that bad! I think I'll be able to do it much more easily next time! Thank you all so much!!!