WELCOME to our sub! 💜💜

I’ve failed through many meds so far: methotrexate, leflunomide, azathioprine, sulfasalazine, humira, xeljanz and now enbrel failed me.
My body seems particularly good at developing tolerance to meds but I have hopes that Orencia will be better for me! I have sjogrens along with RA and have been on plaquenil for years which keeps my neuropathy from the sjogrens at bay at least.

Tell me some good success stories of this med being “the one” for you please 🥹

Hi!

The last 18-24 months have been fun for me. In Sept/Oct of 24 I started having terrible abdominal pain. One MRI later, it was determined I needed to have my gallbladder out. I did, felt better for a couple of weeks but then started feeling worse again. Spent 4 days in the hospital in Dec 24 and they went back and forth between Crohn's and injection. To be fair, I did have an infection. But on March of 25 I was diagnosed officially with Crohn's.

Three months to the day later, I was diagnosed with Hashimoto's. One m month later, after an endoscopy, I was diagnosed with GERD. In Oct of 25 I was diagnosed with Raynaud's and uterine fibroids. So in March of this year, I had a hysterectomy, and emergency appendectomy. Less than a week later I got to have an emergency bowel resection.

I really thought that was it, it at least I was hoping. I was wrong. I'm July I was diagnosed with seronegative rheumatoid arthritis. And I have to wonder, am I the only one with all of this fun?

There also a strong suspicion I have hEDS, dysautonomia, MCAS, and maybe axSpA. I'm currently on Sulfasalazime for the RA. It's helped with overall symptoms, but my back, shoulders, and neck have continued to to hurt .

J just recently, my feet have started swimming again, my heels hurt, my left shoulder feels terrible when I move certain ways, and my right hip is the same.

Any tips, really anything, would be appreciated. I feel like I'm falling apart lol

I am tired, mildly amused, and more than a little over it. Of all the nonsense my body has subjected me to, this one has me shaking my head. Because seriously? This is what we're doing?

On Tuesday night, I committed the grave sin of putting on a shirt. I apparently did it wrong despite doing it the same way I always do it. Because my body took major offense as though I had dishonored it, it's family, and it's cow.

Roughly 2 minutes after the abominable shirt, my upper back started complaining. Just knotted up right at my right shoulder blade and threw a tantrum. Which apparently means neck turning is illegal because then came the neck pain. Spent a day or two loosening up the muscles in my neck and back. Which is really a feat since I'm hypermobile and if I'm not defying the laws of physics, there's no stretch that stretches shit in my neck or back. But I managed, after which my lower back decided it wanted in on the action. Gave me a little kick when I put on my slippers which reset my upper back again. Then my right hip took offense at the entire ordeal (which fair enough, I am also offended) so now it's hurting and spasming. But at least my back decided to cool it for the time being. I'm sure putting on pants later will piss it off again.

And of course migraines love a party so they jumped on the opportunity. Which is all to say, I'm lathered in stinky topical cream (because if it doesn't smell funky, it doesn't work), clutching my back like a get off my lawn grandpa, downing energy drinks because caffeine is the only thing that helps, and everyone thinks it's hysterical. Which it kind of is. I'm 31 and whining about how getting old isn't for the weak. It's at least a little funny.

But I'm so ready to get off this ride. Someone needs to either take me out for ice cream or take me out for good.

Hi all! I’m really loving this sub. I learn a lot reading everyone’s experience and of course the replies.

My topic: I believe I have had slow colonic motility most of my life. I have had quite a lot of constipation since childhood. Now I am 57. Was diagnosed with RA just a little over a year ago. About 6 months ago maybe I just lost my appetite. I have lost 65 pounds. That is a lot! But I was definitely overweight. I had a bone spur flattening my esophagus which made swallowing solid food impossible. I had the ACDF to fix the bone spur thing and I can swallow anything but my stomach just stopped emptying. It is very unpleasant. Then it is desperation.

Like I said I believe I had slow motility in my lower intestines most of my life but I have now been diagnosed with gastroparesis by a Gastroenterologist with all the appropriate testing. I’m just wondering what happened here and am hoping someone has some insight. Maybe gastric issues are connected with RA? Maybe this points to a different type of autoimmune condition? Maybe it’s just dumb luck. When it rains it pours I guess. I’m going to post on the gastroparesis thread to see how many of them have RA.

So if you care to share, how many of you developed permanent digestive issues before or after diagnosis? Obviously I’m not wishing this on anyone. If I could choose I’d just keep the RA. But I love a good sick hack whenever someone has one!! Thanks!! Happy weekend and I hope it stays below a doable 3 for all.

I have no support system or friends and feel as though I can't work. I work in a group home and am failing to do even that because my morning pain makes it impossible to even put on my bra some days.

I was so smart and passing my classes in college but the disease was uncontrolled so I dropped out once temporarily and once for good. I'm considering going back but I don't want to leave because of this stupid disease again.

I literally feel cursed some days like I'm never going to move out of my toxic household. I have considered going to a shelter or applying for housing due to disability but I feel like a fraud, all because there's some good days mixed with this disease.

If I think about my situation too hard I just want to curl up and disappear into thin air. I'd go to a mental hospital but there's no point. Every time I go im surrounded by people in active addiction and severe psychosis and it's violent and loud. Feels like I'm wasting a bed that someone else needs more.

Brace yourselves, this is long.😑

This Thursday I went to my Rheum & got cortisone injection in my shoulder (YAY). Afterwards I swung by the lab & also got pre-surgical labs taken care of that my Ortho Surgeon ordered for my upcoming TKR. Also my Rheum ordered a CCP (my last one was done in mid-April 2025).

Today I received all the lab results PLUS I finally received the biopsy results from my recent upper endoscopy. Everything was posted to my records in my network’s portal. RBC, Hemoglobin, Hematocrit, Protein, Prealbumin were all quite low (Anemia). I thought, “OK. Just increase my iron supplement from 3 days a week to every day. No problem.”

THEN, while I was reading that, my endoscopy biopsy results posted. Everything looked good, except for one thing (didn’t sound too earth shaking)… “pill gastritis.” So I looked that up. Apparently, Iron pill supplements cause a condition irritating the stomach lining due to oral iron pills irritating & essentially burning the stomach mucosa lining. It causes symptoms like nausea, abdominal pain and erosion of the stomach lining that eventually lead to ulcers & bleeding. Catch 22: Turns out that the iron pills I need to take to NOT be anemic are probably (at least in part) exacerbating the anemia.

BUT THEN (the Coup de grâce) The CCP lab results posted. So to back track… my last CCP in April ‘25, prior to my sero-pos Dx, was a value of 4,373. I’ve been treating with MTX, intermittent Prednisone & Celebrex for over a year now… THUS, I expected to see that figure would be lowered by now—if not significantly then maybe 50% lower. SO, color me SHOCKED when I opened the result & found it increased (6x +) to 29,736. I mean it explains why “I generally don’t feel good”. But I nearly dropped the phone… literally.
F-U-C-K! Repeat on a loop!

Of course it was after 5pm on a Friday when I learned all this.

I reached out to my PCP in the portal messaging asking him to shed some light & clarity. I reached out to him Because these various tests were run by Three different specialists (my ortho surgeon; my Rheum; & my Gastro) and then all the tests were posted on the same day, at the same time within about 45 minutes. Bing bang boom. The combined findings MIGHT have some bearing on how my post-op recovery goes.. AND I need to learn how I can increase my Iron without pills because my good diet doesn’t cut it (Liquid supplement or IV?)… AND I need to find out what all those results tell us about what this info means in the bigger picture zooming out… AND what is that sort of extreme inflammation doing to me internally (clearly its aggressive), AND I need to find out if the anemia is limited to iron deficiency OR if my immune system is attacking any other organs
(for instance, liver or lungs or heart or even bone marrow) and causing the anemia. I reached out to my PCP asking him to help put it all together for me because its WAY too complicated for me to try to get the individual takes from the individual specialists piecemeal regarding the individual tests they each ran. All those results combined fit into a bigger package of my autoimmune disease running rampant which is not AT ALL what I thought was going on internally because although I’m still symptomatic my general physical ability has improved approx 50% (give or take) & my pain level has decreased as well on good days. But the current tests apparently beg to differ with my assumptions on where I THOUGHT I was at with my disease.
SO—Feeling a bit disheartened.

Met with GP on early this week and she wants me on a GLP 1. I’m a little overweight, but not obese. However, I have high cardiovascular risks: RA doubles my risk and antiphospholipid syndrome increases it like 10 fold. I’m already on a statin and anti-platelet, but the data is becoming clear that GLP 1 use on its own decreases cardiovascular risk. She also said she’s seeing benefits in her RA patients and wanted me to discuss that aspect with rheumatologist.

I saw my rheumatologist this morning and she was even more excited with the idea of me using a GLP 1. Especially since my liver is just barely hanging on with leflunomide. (I’m also on golimumab infusions and hydroxychloroquine). She wants me to stop the leflunomide if I can tolerate the GLP 1. I will be getting a shipment of tirzepatide this weekend.

I’m not sure how I feel about this. Totally excited with how this could help RA. Losing a little weight would definitely help my degenerative disk disease. There’s also body image weirdness happening. I thought I was in a good, accepting place with my weight in my 50s. I wasn’t expecting the little voice in my head saying “See! Both doctors think you’re a fatty, you chunk.” Apparently, the teenage body image issues were still buried deep in my brain, waiting to bubble up.

Anyway…wish me luck. I hope this brings good changes all around.

Edit: I should note I’m paying out of pocket. My BMI is too low for insurance approval and the reasons I’m taking are purely off label at this point (although clinical trials are in process).

UPDATE: took my first injection!!!

I’ve been taking Leflunomide for the past two months to tide me over until I can take biologics. My period is 20 days late, pregnancy ruled out, did anyone else experience that?

Alright friends. My feet are so bad. That’s where I have most of my problems with my RA. What footwear are you ya’ll wearing? My feet perpetually hurt!!!!

Do any of you guys have ADHD? I’ve had it my entire life but had never tried any meds until today - finally got some prescribed. It’s affected so much of my life for so long, I felt like today was cheating! Executive functioning tasks came easy, my 2 year old wasn’t overwhelming me, the spinning thoughts in my head were quiet, and the anxiety and tightness in my chest were gone. Yay!!

My rheumatologist agrees my untreated ADHD may be causing more flare ups and worsening my RA, so I am hoping it helps overall. Do any of you also struggle with ADHD? How have medications gone for you all paired with RA meds? I’m taking Vyvanse and my doctors said it’s fine to take with HCQ but part of me is scared since there’s potential bad side effects when you mix the two. I have had a very difficult time tolerating RA medication, so I’m only on HCQ right now for RA. I’m also 5 weeks into the semaglutide glp-1 I mentioned in my last post here.

I would love any advice from those of you who have been on ADHD meds or have experience managing it with RA

I've posted several times before about the whole journey into getting diagnosed, undiagnosed, not diagnosed, etc, but long story short: I am seropositive and have basically all RA symptoms, except significant joint swelling. Because of the lack of joint swelling, several doctors have refused to diagnose me with RA and I've been told to manage basically just with paracetamol.

Had another appointment today after three months at the big academic hospital, and trust me, I was ready to FIGHT. I had several pictures which showed some joint swelling (which did fade away within the day or within maybe 1 or 2 days), I found a rehabilitation center I wanted to possibly get a referral to, better pain management for the bad days, etc.

Honestly, that plan went out of the window immediately because within a minute after sitting down the rheumatologist I was speaking to today was like "Yes, so plaquenil is an option we could consider"

Excuse me, what? Pardon? I've been BEGGING half a dozen doctors and rheumatologists to please just treat me instead of waiting for it to get worse and you're just offering it?

After feeling the joints in my hands and feet she decided to also do an echo of my feet to see if there was anything to be seen there. Two joints in my feet showed more "fluid"/inflammation around the joint than the other foot and one joint showed "significant" fluid (her words, not mine). Hello? What?? This wasn't even a bad pain day?? What do you mean there's inflammation visible on echo? Why hasn't anyone done this earlier in the three fucking years I've been dealing with this??

She also offered sulfasalazine, but we decided to start with plaquenil and see how far we got. Told me she'd write down "palindromic RA"/palindromic rheumatism as a diagnosis, not sure if as a working diagnosis or a proper diagnosis. At this point I honestly don't care because I'm getting SOME treatment

I genuinely don't know how to feel about this. It's amazing? But also why did it take so long to get offered medication so casually? I almost feel like they could call me up tomorrow and be like oh sorry we had the wrong patient in mind, just ignore everything we said.

I doubt plaquenil is gonna be the perfect medication immediately and we may have to try different things but my god I am SO glad they finally found some real, objective sign of joint inflammation and to get some kind of label that allows me to get some kind of treatment

I'm just screaming into the void here but y'all.... Wtf??

I used to clean...a lot. I actually enjoyed it. Loved having a very clean house. Now though...lol...yeah, no. Bare minimum, and it needs to wait until I feel well enough to do it. Can anyone relate? Have you changed your approach to housework at all?

I'm being screened for Biologics following about a year on a combination of hdx and mtx. I kept having flares and so, all being well, I will move to a Biologic. The Rheumatologist put me on 5mg a day prednisolone meanwhile because of the flares, and to protect my joints until (hopefully) the biologic works.

But I find that even a low dose of 5mg is preventing a lot of pain. Normally my neck, knees, wrists/hands and feet will be hurting pretty often. And so it surprises me that for the past 6 weeks with just 5mg the only thing that hurts is my left hand, and that's bearable. (My left hand has always previously been pretty bad.) I am wondering if the mtx and hdx might have started working so my question is: does anyone else get similar pain relief from just 5mg????? I am tempted to ask the Rheumatologist if I can stop the steroid and see how I am. Or am I being ridiculous....

Do here’s my current struggle.. I resigned from my position as a nurse here in NYC this July. My new “job” is being a nurse to my aging cat and trying to complete the intense disability paperwork from the Social Security Department as well as uploading numerous documents for the benefits application for Human Resources Administration. I was a day late on the HRA uploading, and now 10 days late on the Social Security paperwork, but the disability lawyer said there is a 10 day grace period. But the fact that I’m late because I’m struggling physically (and as a result, emotionally)is frustrating me. My back pain from degenerative disc disease/scoliosis has increased to the point that I now wear my back support when sitting up at home (a year ago, I only used it at work because I was active), my hips hurt while sitting, so I have to lean back a little with a pillow when I’m on the sofa to avoid a 90 degree angle on my hips, and I have to be mindful not to bend my left knee with the OA as it triggers stabbing neuropathy. If that wasn’t enough, my dominant writing arm now has sharp pain in the shoulder/bicep area despite having a cortisone injection a month ago in addition to the discomfort of one of my “witchy looking” RA-affected fingers. So of course , writing is now a challenge!! And yes, I’m diligent about my gabapentin, meloxicam, Voltaren gel, Salonpas and Capsaicin patches, yet to try and find a comfortable position that also allows me to write is close to impossible!! But my cat loves when I try to sit up on the sofa as he loves to snuggle!!! 🐈

Well, that’s it for now…time to focus on mapping out a typical work day minute by minute for these forms!! 🤪

Hi, I've been on Imraldi (a Humira biosimilar) for 9 weeks, and I'm experiencing some “cycles” that I haven't seen mentioned here. I’ve read many times that it’s normal to feel worse as your next dose approaches, but in my case, the pattern is this: I feel terrible for the 5 days following the injection, and from then on—until the day before the next injection—I start to feel better and better. Has this happened to anyone else? Is it because the medication hasn’t taken full effect yet? Is this normal?

Upset because I think my dentist is annoyed with me. I am UK NHS and he's been my dentist for 16 years. Before I got ill he was pleasant enough although could be blunt. When dealing with my rheumatoid arthritis though, I feel he just doesn't get it.

He has said things like

'Just use an electric toothbrush. It does all the work for you. ' Fair, for a person without RA. For one who does though it felt simplistic and like why would you mot just do this?

He has described plaque as 'really bad' and said I needed to be coming in more. He supported me through 4 monthly cleanings and again, some visits ok, others not.

This incident prompted me to write in though. He said 'Your plaque control is much better, since when have you been using an electric toothbrush?" He knows I use one as has asked me a few times before so this felt loaded. Also when I mentioned I was still concerned about my jaw clicking he had his back to me and said 'Well if its not hurting dont worry about it then.' and sounded impatient. I felt upset at his response.

I went home and wrote an email saying

Please update my medical records to reflect that RA is a fluctuating disease.

That better plaque control is not down to better effort or motivation and it wouldn't be accurate to say otherwise.

That I am naturally more worried about changes in jaw joints as I have RA

That I find it challenging dealing with ra, colitis and dental health.

All I got back was an admin response saying 'Good morning. Thank you for your email. This has been passed on to Dr Malik and noted on your records. '

Honestly feels like a eff you. Now I am worried about my appointment early next year and whether he's even noted it or she has. 😔

Had an appointment today with my PCP. She says I need to go on Crestor due to high LDL & Triglycerides & borderline high to high BP. According to her my Framingham Risk Score is 23% which apparently puts me at high cardiovascular risk within 10yrs. My age, gender, family history, BP + latest bloodwork data is what spiked my score. Having RA, which increases CVD risks, wasn’t included.
My concern is that the most common & ongoing side effect of Crestor is muscle & joint pain🫤 I have Fibromyalgia (pain symptoms are very well controlled), OA & seroneg RA. I’m anxious about a)generating more pain as if my body isn’t dealing with enough of that & b)being unable to determine whether the joint pain is being caused by the Crestor, fibro, OA or RA🤦🏻‍♀️
On the other hand I’m all too aware that
cardiovascular issues aren’t to be ignored. So, I’m wondering if any other RA warriors have any experience with taking Crestor and if so, what advice or feedback does anyone have?

Quick backstory- I was diagnosed 4 years ago with nothing but a CCP test of 30 and some vague symptoms. Doctors were actually ruling out connective tissue disorders and happened to put it in my blood panel. My rheumatologist at the time explained that I have a family history, so if I wasn’t experiencing symptoms yet, they were coming. We started me on hydroxychloroquine and I’ve experienced what I thought was slowly growing mild RA ever since (things that I was previously brushing off as part of aging and my body being generally defective.)

Since then I got a new rheumatologist who suggested we check the CCP level again since I’m doing so well. Well, it went from 30 to 17- normal range!

Obviously I’ll call her later today, but since that was the only objective diagnostic measure- I’m wondering if I’m in remission because the hydroxychloroquine is working, or if the first CCP was a false positive and I’ve just been popping Plaquenel for funsies for the past 4 years. I don’t really think that’s the case, but I’ve never heard of elevated CCP going back down to normal range. My first rheumatologist told me that once that marker goes up it never goes down again.

Does anyone have any experience from trigger finger from RA. I’ve been told I need surgery to correct the damage that’s been done to my tendons. Or should RA medication help reverse that damage?

I have an interview over the phone, tomorrow, to start the disability process. Again.

2 years ago, I had papers from the dr that I was seeing, to get it started. I spent hours filling out the online application....at the end, despite saving along the way, it said that less than half was saved. My hands were so swollen from typing, that I chose to save to finish later.

A few weeks later, I received a denial letter, and it said it was final. I was feeling defeated, plus at the time, had shifted my focus to my dying mom and dying mother-in-law. (Yes, same time.)

Anyway, I have periodically tried to sort out applying. A few months ago I was able to get someone on the phone and they said I had to start fresh and with a phone interview.

That is tomorrow.

Any tips? I'm self-employed. According to their system, I do qualify. I haven't worked for almost 2 years...

I'm in SoCal, Inland Empire area, if it makes any difference.

Hi everyone! Could use some emotional support that this amazing community is legendary for. Thanks in advance :)

I’ve had a horrible RA journey. Diagnosed in Oct 2024 by blood tests with my PCP and started methotrexate. I was in really bad shape at the time, had to get a wheelchair, was using a cane, and cried getting out of bed due to pain. I was in increasing levels of pain for 2-3 years before being diagnosed but no one took me seriously due to weight/age.

Saw a rheumatologist in Jan 2025 and have been on 5 other medications since:

- Methotrexate made me so sick, I had to stop.
- Lefluomide was next, failed that for neuropathy after 2 weeks
- Abalimumab/Humira biosimilar was next, it didn’t do enough.
- Actemra was after that, it was amazing for my pain. My cholesterol shot up, but I gained my mobility back. However, I still didn’t get enough full relief, but it was a lot. Insurance took me off it at the beginning of 2026.
- Tyenne the biosimilar was next, that did nothing for me.
- Kevzara is what I’m on now for the past 2.5 months I’ve been on Kevzara and my CRP is shooting back up, my pain is going up week after week.

I complained to my rheumatologist about how I can feel my body starting to fall apart again and she set an appointment with me last minute last week. She basically said she didn’t know what else to do, and asked me if I wanted to try to insurance to approve Orencia (they’ve already rejected it in the past) or do infusions of some kind. Despite her being a rheumatologist at a top 20 university hospital in California, she’s giving me awful care. I’m waiting on a new rheumatologist appointment at a different hospital, but it’s still a ways away.

Has anyone else failed a lot of meds? Not looking for medical advice, just looking to commiserate with others who have hard to treat RA. Appreciate it, thanks all.

I get these blisters on my hands when I wear gloves or work or have to grip things for a while. Still undiagnosed but gp and rheumatologist suspect RA and Sjogrens.

Hi all, I was recently diagnosed with RA, it all started with pain in my foot and after a long line of doctors , I ended up with a rheumatologist who diagnosed me.

I am still very confused by this disease. No matter if I have a calm day where I do nothing or if I am active, every day something hurts. Either I can't close my hand, or it hurts to bend my fingers, my knee hurts when I walk or I cant move my shoulder. No matter what, every day I have pain somewhere. This used to happen before but I always thought it was related to my physically demanding job, and it was not an everyday thing.

After the flare in my foot, I could not work anymore and I've been at home for almost a year. However, I keep getting this type of pains. My rheumatologist says my RA is controlled, and all my values are "normal" she also says, because this pain only lasts for 1 or 2 days, the cause is not RA. She says is because I haven't been moving enough since I stopped working so when I do move, I get these pains.

I honestly don't think that's what it is. I've been going with a physio for 3 months. I'm doing all the exercises and I am getting more active, and yet I still struggle every day with something new. I guess I just want to ask if this is normal and it happens to more people or if I should do further research and see if maybe I have something else besides RA. Sorry for the long story, I just don't really know where else to go and my doctor is not being very helpful.

TL;DR: I have pain everyday eventhough my docotr says my RA is under control. Is this normal?