r/rheumatoid

Hi all, I’ve been on Humira for almost 3 years now and it’s started to produce some significant side effects due to which 2 of my doctors have advised me to switch to RINVOQ. I would really appreciate hearing your experience on 2 questions I’m pondering:

1. Are the side effects from Humira really side effects? Has anyone else started getting eczema, skin sensitivity, random rashes, tingling in hands and feet, sometimes numbness a few years into taking Humira?

2. Has anyone actually successfully gone on RINVOQ without experiencing acne, fatigue, and other side effects?

I just don’t want to switch to a medication that’s 4x more expensive and potentially more harmful in the long run to clear up my skin, as important as that may be.

Thank you!

Hey everyone!

I’m 33F and nearly 4 years into my RA diagnosis, although looking back I’ve probably had symptoms since I was around 17.

Over the years I’ve been on Plaquenil (3 years, recently stopped), prednisone (worked amazingly, but I didn’t sleep for 5 days and became manic lol), sulfasalazine (had to stop because of liver issues), and now Cimzia for around a year. Cimzia has definitely helped, but I was still struggling, and still having flares, and unable to be active.

Along the way, particularly with prednisone, I gained around 15kg and became really uncomfortable in my body. Even with Cimzia and Plaquenil, every time I tried to exercise I’d end up with joint pain and a week-long flare.

So I asked my doctor about GLP1s, initially to help with the weight I’d gained while I continued trying to introduce low-impact exercise.

I know there’s emerging research around GLP-1s and inflammation/autoimmune disease, including RA and lupus, and obviously everyone is different, but I just wanted to share my own experience because I genuinely could cry.

After around 6 months on 0.5mg weekly, I AM WEIGHT LIFTING AGAIN WITH NO JOINT PAIN!! 😭

I’ve also lost the 15kg I gained, but honestly, being able to move my body again is the part I’m most emotional about. I’m genuinely in disbelief. I feel like I’m getting my old self back. Even Cimzia + Plaquenil together hadn’t gotten me to this point. Of course I get muscle pain but I actually love that feeling now, because it’s a constant reminder that there’s no bone pain.

I still get minor flares and aches here and there, but they’re usually not even significant enough for me to take ibuprofen, and importantly, exercise doesn’t seem to be triggering them anymore.

It’s winter where I am at the moment, so I’m really curious to see what happens when we get back into the extreme heat and humidity of summer, which has historically been my absolute worst weather for flares. But gosh, I’m hopeful.

I just wanted to share a positive experience because before starting semaglutide I was really sceptical and a little worried.

Has anyone else with RA had a similar experience on a GLP-1? Or is anyone considering trying it? I’d love to hear your experiences!

CCP >250, RF 214, ESR 112, CRP 60.

Had a follow up with my pcp who diagnosed and when she heard I have another 6 weeks until my Rheumatologist appointment she said she was going to prescribe a low dose of methotrexate so I can get started because my levels were relatively high.

I’m new at this so I’m not 100% sure how high “high” is. But I’m a little surprised how aggressively she wants to treat this. She did ask to see my joints and said there is visible swelling, and it’s time to start meds. And she put me on hold to consult with a rheumatologist and put in the script immediately.

So ??

I guess I’m starting my mtx journey this week. Yikes.

Anyone with more knowledge and experience have any advice? Thoughts? Anything?

I'm a 22f who hasn't been to the doctor in like five or six years now after being told that I won't be cured. I was diagnosed with Juvenile rheumatoid arthritis when I was 2 years old and have been on medication since. I wasn't educated on the medicines i was taking and had always been fed hope since I was little that I will one day be alright. So being told otherwise after all the things I went through changed something in me, leading me to lose hope and eventually refusing to go back to the doc and depending on prednisolone alone since that killed the pain and kept me going (which was a stupid decision ik but i was going through a lot mentally). Though my condition hasn't worsened or improved, I'm worried this will eventually cost my joints or worse. But missing five to six years of appointments has increased my anxiety and now whenever I think about booking an appointment, i panic. I don't know what to do. Thinking of going back makes me sick in a way, nauseous even. I think it's fear. I think I'm scared to go back after such a long history of negligence. I'm scared I'd be scolded for missing appointments and taking things into my own hand. I think I'm screwed.

I wanted to know if anyone has missed their appointments as well and ever went back. Idk if reddit is the place for this but yeah, anything to ease my anxiety.

I'm only on leflunomide and low dose naltrexone right now; starting rituxen in a few weeks. Been a few weeks since I dropped hydroxychloroquine. So essentially I've been (for me) undermedicated for a few weeks. Definitely feeling it. The other night the pain woke me up, which was super uncool of it. So I gave in and started a round of prednisone. I've seen a few posts lately about how prednisone affects mood etc. Hahahaha!!! (Note: I work in a doctors office)

So far, two days in at ONLY 12.5mg:

- I cried because I love my boss' dog so much

- Almost argued with a patient (whoops!)

- I swore out loud to myself because a car drove by...in a way I didn't like (??)

- Saw a TV commercial for Heinz ketchup and omg I've never wanted ketchup so bad in my life

- Minutes later THOUGHT of mashed potatoes and omg THATS the best thing ever

- Jokingly/not-jokingly told my partner we could easily do some light demo in his backyard

- Refilled my 7-day pill organizer at midnight

- Looked up how to fix my partners coffee maker this morning, absolutely confident I could repair small household appliances

- Told my boss we should repaint our office (with the sense that I personally could do that)

- In one phone call scheduled a patient for today, solved a billing mystery, and then when they mentioned today's copay I actually said "oh right, I didn't see you have an appointment today!" Whaaaat! Me to me: girl you just scheduled them.

- Brought SIX drinks to an 8hr work day

- Got so hot I was fanning myself with a drug rep's sales folder

- Told my coworker we could super probably fix a light on her cars dash (apparently small appliance repair has expanded)

And it's only the afternoon of day 2! Ha!!! (Please tranquilizer dart me)

Edit: NOT my first time on prednisone lol

Hello! I was just curious if anyone here has a service dog for arthritis and how it works? I was diagnosed with JIA at 16 and now at 22 I have RA. Things like bending over, squatting or getting up from a chair can be really hard for me sometimes. I've considered getting my Bernese mountain dog service trained to help me with these difficult tasks. Does anyone have a service dog solely for arthritis?

Hello everyone.

Im 23 M

Rhuematoid has effected every aspect of my life. Theres not a single thing i do from texting to walking that I do in the same way. No im not talking about frequency but the actual way in which I move my hands, as little things like the distance between letters on the screen and how hard i press on a button while typing changes the severity of pain.

I experience little to nothing, when im mindful and reduce how much my hand types around the screen. When I type something out. And its not even accessible to me all the time. Sometimes I straight up just sleep not because im tired but because theres not a single activity I can do including texting that requires going through pain. Since its inconsistent and fluctuates throughout the day.

My parents are incredibly self focused people (not seeing how issues effect people outside of them). Not in every way, but this way specifically: they only notice when I cant do something if it inconveniences them. Not me or how it effects my life. They dont pay attention to what I cant do that inconveniences me or makes life more difficult, boring, would be tedious than when i was healthy. I cant do any fun activities. I cant journal like I want to. I cant use my laptop. I cant write or draw on paper. I cant take care of my plants. I cant make money from doing something and use it for myself. I cant work- which they dont care about or see the difference in because I struggled with working before. But I outright cant work. Which is a major difference. I cant trust ill be reliable on a laptop job. Even with accommodations such as voice control im scared that they'll be a technical issue or that Ill be too sickly feeling while sitting on the chair for hours and hours.

Im not in a stable zone. I dont have medicine that works for me yet. I was diagnosed 3 months ago and my life has changed very quickly, because they onset nearly overnight to an extremely bad point.

But essentially. Ive been asking and begging for help. And theyre telling me that its inconviencing them and that I have to be lying because they only noticed the things I struggled to find out I can do and dont make me completely miserable. Or things I have to do for myself (theyre not setting my appointments, messaging doctors, or applying me to disability). Im doing all on my phone.

They see me on my phone, and say that it makes no sense that I cant carry piles of clothes. Move boxes of stuff around. Bend. Etc. Organize well. As though not only that effects them more than it does me. But also that the other way its impacting my life dont matter. And the basis and argument is always, you can use a phone. It confuses me.

I understand rheumatoid can be an invisible illness very often. But even then I dont understand the logic. Are you guys able to use your phone but struggle with chores, especially without tools (like arthitis sticks, etc?). And using keyboards, buttons, bending to get stuff, etc?

There are certain movements with my wrist that hurt like crazy. While other ways I move my wrist dont at all. Its very specific in how and what causes me pain and it took a lot of time trying motions out to figure it out.

Is that normal?

It also doesnt a lot of sense to me when the pain is experience is full body but people hyperfixate on my hands. My hands arent even the most painful part of my body. And someone displays in front of me, "look just do this, its just your hands!" And they bend their neck, bend their knees, bend their ankles, move their neck around, and move their wrist in large motions up and down. While i avoid many wrist gestures, reduce the amount I bend, and try not to walk too much because of ankle pain.

I was hoping to get some insight from others with RA on prednisone and methotrexate.

Background info: I (31F) started experiencing symptoms the first of January, I was put on 20 mg of prednisone in April after my MRI results until my rheumatology appointment, and I was diagnosed with seronegative RA the first week of May. I started methotrexate in May at 12.5 mg while tapering off the prednisone. I was then increased to 17.5 mg near the end of the taper when my symptoms started to come back but I can't tell a difference with it yet.

My next appointment isn't until mid September, but my symptoms are getting worse weekly since fully stopping the prednisone a month ago. In January, I could not fully bend my fingers/make a fist with either hand, I had almost no grip strength and could not pick up glasses/my phone/turn door knobs/etc., and I had a lot of hand soreness/sensitivity with even minor use. All of that went away with the prednisone except for some mild stiffness still. Currently, all of my previous symptoms are coming back. However, I started having pain/stiffness in my toes a month and a half ago that's now hitting my wrists and ankles as of the past week or so.

I already messaged my rheumatologist in the portal to ask if I need to go back on prednisone in the meantime, but has anyone else had their symptoms come back fully when getting off prednisone? Has anyone had methotrexate kick in after this long and start actually working or did you have to start adding in something else to get relief?

Sorry if this is a huge ramble, I've just been pretty disheartened since the symptoms started coming back so I was looking for others' experiences + a little hope that my quality of life can get back to normal eventually!

I’m 24f and started my journey 3 years ago, but I’ve been struggling to move through medications to find ones that work for me. It’s incredibly hard to actually see my rheumatologist to get any changes in medication, I’ve only managed to go through the specialist nurses most of the time, and even that takes having a severe flare and then waiting ages before they’ll even book an appointment to see me to look at my medication again. I don’t even technically have a rheumatologist anymore even though I’m under the department, because my previous one got sick and is permanently off work so I’m on a probably year long waiting list to get assigned to one of the other rheumatologists. In the meantime, my GP manages my medication and reviewing blood tests and the specialist nurses will occasionally see you for flares. But I’m struggling to get anywhere. So with that brief insight.

I was wondering if anyone has any advice for handling nausea on methotrexate and sulfasalazine. I’m on 20mg methotrexate injections with 5mg of folic acid 6 days a week.

Despite the folic acid and taking it by injection I am still suffering with nausea. I feel sick on and off throughout the entire week but particularly the day after my injection (Although it’s not often bad enough to cause vomiting and that’s always day after). I’m already on the max dose of folic acid they are willing to provide and taking it by injection to minimise gastric side effects. The nurses suggested anti nausea meds if I couldn’t tolerate it but I’m worried about drowsiness, and I have no way to get back in contact with them again to ask any questions because they’ve said I have to go through my GP for anything until I get a consultant again. They’ve put me on the list for an urgent rheumatology appointment but given that I don’t currently have a rheumatologist even though I’m still a patient in their department that could easily be a year from now.

So in the meantime, does anyone have any other suggestions that have worked for them for nausea?

Just wanted to share this info for those on B-cell modulating or depleting treatments.

Hi, all! I’ve recently received some labs from my first rheumatologist appointment and am curious if anyone has had a similar bloodwork pattern, particularly early on in the process of being evaluated for RA?

I recently had a rheumatology workup and my results were:

Anti-CCP: 8.5 (positive; normal <3)
Rheumatoid factor: negative
ANA: negative
ESR/sed rate: 40 (high; normal <20)
CRP: 5.1 (slightly high; normal <5)
Anti-Smith, dsDNA and SSA/Ro: negative

I know bloodwork alone can’t diagnose RA, and I’m following up with my doctor. I’m mostly curious about other people’s experiences.

For context, my appointment was prompted by my ortho history - I’ve had 7 shoulder surgeries, including the world’s first 3D printed clavicle - and I’ve recently found out my rotator cuff is torn again. Before any decision to undergo another procedure, I wanted to be sure I covered all my bases and made sure there wasn’t some sort of underlying inflammatory condition contributing to my complicated history.

Did anyone here have a positive/low-positive CCP but negative RF and ANA when they were first being evaluated? If so, did you eventually receive an RA diagnosis, and what ultimately helped confirm or rule it out—symptoms/exam, repeat labs, ultrasound/MRI, etc.?

I’d especially love to hear from anyone whose results looked similar to mine!

I am writing this as a cathartic session and also as a sort of case of how my RA has delayed my final diagnosis. At least I believe it did a little.
Sorry that it is going to be long winded. I tend to talk in person like that too. But maybe you guys can cut me some slack in this situation lol. Just let me yap!

Background:
I was officially diagnosed with RA in 2022. Went through a few different treatments and two rheumatologist. Finally settled somewhat on Rituximab. This causes significant immunosuppression. Simple illnesses take me a couple weeks to recover from. So prolonged periods of being sick doesn’t usually phase me.

March: Earlier in the month I caught a bug and started coughing. When my cough did not ease, I went to the GP and got prescribed antibiotics in case it was mycoplasma, also got on Symbicort due to some breathlessness. I also had my regular appointment with my Rheumatologist this month, so I mentioned my coughing. She was not worried, we both believed it was the immunocompromised body taking longer to recover.

April: Coughing continued, starting to include phlegm. It gets worse with activity, eg just walking to the car causes a coughing fit.

Mid April: Went back to the GP, he is worried and wants a chest x ray. X ray shows a chest infection. I decided to bring this to my Rheumatologist. She starts a course of Prednisolone. She believes it is still my body have a really hard time fighting off this particular bad bug. I thought I got a little better after the steroids.

End April/Early May: We had our annual family holiday! I was still coughing and the day before our flight, I had an intense sharp pain on my right side around the ribs. It was like a knife stab whenever I coughed. Googling and all that led me to believe it was probably intercostal muscle strain or costochondritis. I really didn’t want to affect our trip, so I brought along paracetamol. It helped blunt the pain a little. Throughout the trip, the pain would slowly ease a bit, then after a really bad coughing episode, flare up again.

Mid May: I have an appointment with my Rheum to discuss my scheduled June Rituximab infusion. I did my regular blood tests and other than a higher CRP and ESR, which aligns with my on going “illness”, nothing stood out. All functions were great, all counts looking good.

End May: Side Quest! My annual Pap smear came back abnormal and I was scheduled for a colposcopy, hysteroscopy, biopsy and probably more that I can’t name off the top of my head. Results came back benign phew.
All this time, I never stopped coughing. Every time I wanted to cough, I had to stop whatever I was doing, squat down, hug my ribs tight to brace, then cough. My rib pains would slowly dull over a few days then restart afresh. Knife stabs when it is fresh, a fist punch when it is dull.

Early June: During my scheduled Rituximab admission, I had a CT scan of my thorax done. Immediately my Rheum brought in a Respiratory Specialist. I had a small nodule in my right lung and ground glass opacities and other things. Rheum says possibly the start of Interstitial Lung Disease. Respi says for now, we are going with Bronchiolitis and monitoring it closely. They gave me IVIG treatment and a lot of pain control for the ribs. Highly suspected rib fractures. Phew thank you for painkillers. We decided not to biopsy the nodule right now because they think it is due to the inflammation because of my RA background. A lung biopsy is not zero risk so we thought we could wait and see if it shrinks as we control the inflammation.

End June/Mid July: I try my best to rest. But I am a SAHM, even with a helper doing the house chores, I still gotta be a mum. My son fell sick, we were in the hospital for a while, then he had to stay home from school for a week. I still coughed, though much improved. The rib pain still persisted though. I had a follow-up with the Respi. I did a chest x ray and it showed four fractured ribs. She and my Rheum got me back into the hospital again. They needed me on absolute bed rest. I was discharged after 4 days with a strict rest plan. Was also referred to a physio, as I was constantly breathing shallowly, not coughing effectively, and had to learn how to work around my fractured ribs. We are still working on bronchiolitis.

End July: I reached out for help from my family and they really showed up. Everyday. I love them. They are the best!
With physio and rest, my ribs slowly stopped hurting. However, I started feeling pain in my lower back. I attributed it to a strain, having coughed hard in a bad position. Over the next week, the back pain got worse. Finally on a Saturday night, I fell. I was walking to the bedroom when a sudden sharp electric seize happened in my right lower back and my right leg just gave way. Luckily I did not face plant, it was a sort of controlled drop onto the ground. Next day, everybody was off on their regular Sunday activities, leaving me home alone. I “dropped” another 3 times and realized I am now a fall risk. I could not even call an ambulance because I cannot get to the front door myself. I am not having them breakdown my door!

Aug: In the hospital, with my back in excruciating pain whenever I coughed. My husband says I looked like I am having a seizure. It was so painful I just refused to cough if I could. I stayed in a child’s pose position most of the time, hoping that gravity would move the phlegm up enough to sort of huff/throat clear it out. Got an xray and MRI of the lower back. There are many lesions all over my pelvis and spine. Due to my history of RA, they are thinking it might be sarcoidosis. However, it is exceedingly rare in a person of Chinese ethnicity. Of course cancer is at the back of everyone’s mind. Either way, a biopsy is needed to confirm so we got the lung biopsy done. And of course I fell into the minority and had pneumothorax from the biopsy. Needed a chest tube inserted. Did a PET scan the next day. By Friday the diagnosis was confirmed. Stage 4 Lung Cancer. Adenocarcinoma. It has spread to my bones, in many places, especially in my spine and pelvis. In between all that happening, they gave me a PCA (Patient-Controlled Analgesia) and it was a lot of relief from the pain.

I started Chemo asap as the doctors determined my disease was moving too fast to delay. I also got the genetic testing results and I am fortunate enough. It is EGFR exon 19 deletion. There is a readily available oral targeted therapy for it. Unfortunately, my Rituximab immunocompromised body plus chemo’s side effects has already started rearing its head. I caught an infection and am fighting it right now. I have not even left the hospital yet lol.

Final thoughts: I wonder if without my RA, would my doctors and I have been more worried about my cough? Would we have been more concerned about how I could fracture so many ribs? Would we have decided to biopsy the nodule the moment we saw it? Or am I just looking for something to blame?

Oh well. I still think I am very fortunate. I have amazing insurance that covers private healthcare, my upcoming medications and chemo session. And my team of doctors move at lightning speed. I made a cross-stitch of my situation while in the hospital, and they put it as their group chat photo for me haha.

I am still going to fight hard. So damn hard. For my son, I will be there for many many more milestones!

Hey all, I’m writing this post seeking for any advice or tips on starting methotrexate, ESPECIALLY if you have to take it with other DMARDS
-also please share any advice related to
Staying comfortable on this drug as I know I’m most likely to feel very miserable lol
Specifically I’ll be continuing hydroxychloroquine 200 mg and adding in 4 2.5mg methotrexate once a week along with folic acid. And I also got a zofran prescription just incase as well.
I do plan to take the methotrexate at night and I’ve been heavily considering hair skin and nail supplements.

36F

Hi, I’m going to my first rheumatology appointment tomorrow. I had an elevated RA factor and then it remained elevated after recheck a couple weeks later, so I received the referral. I’ve been having chronic stiffness and pain with extreme tiredness.

I don’t know what to expect, but I’m nervous that they won’t take me seriously. I’ve seen horror reviews of doctors just completely blowing people off at the gate and then getting massive bills after minimal communication and zero work up. I’m sure it’s probably irrational and everything has a couple whack-o reviews.

Does anybody have any advice here first appointment. I often struggle describing my symptoms and can’t quite come up with the right words to communicate effectively.

At the 6 week mark now. Wondering if it'll be another week, a month... everyone's different, I know. I'm just tired of these swollen joints and trying to hold out hope for relief.