r/rheumatoidarthritis

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Hi everyone!  

I've been lurking for a while and am usually quite hesitant to post on social media but everything I've seen in this community has been so positive and supportive, I decided to take the leap today! It's going to be a long one - thanks in advance for anyone willing to read it through!

  

I (54F) went to my GP at the beginning of March because my body was in agony - hands, shoulders, hips, knees, feet, everywhere.  He sent me for x-rays and bloodwork.    

Went back at the end of March for him to tell me it seems like I have RA.  I had looked at my blood test results before I saw him again and came to the same conclusion.

By this time, my hands were so swollen it looked like I had boxing gloves on.  He said he'd refer me to a rheumatologist.  I begged for some steroids to help because at that point I had almost given up, the pain was so unbearable. He wouldn't give me any because he said we'd have to wait for the rheumatologist

I live in Ontario and figured it'd be months before I got in to see the Dr.. At this point, I figured I'd give it a few more days and if I hadn't heard anything I'd just suck it up and go to the ER or an urgent care.

I got a rheumatologist appointment the following week - I cried when I got the phone call.

Went to the Dr. she pretty much took one look at me and my test results and gave me an official diagnosis.  I was terrified because my father also had RA, but then developed scleroderma and died from it within 8-10 years.  She has experience with scleroderma and assured me that I do not have it.

She gave me a steroid shot and prescribed me 25mg of Methotrexate once a week (injectable) hydroxychloroquine & folic acid which I started that day.

I told her that I also have another autoimmune condition called Hidradenitis Suppurativa (HS) - she suggested a referral to a dermatologist,  The two diseases are related and apparently, a biologic can be prescribed for the HS right away without having to fail a bunch of drugs first like they require for RA.  There is a notoriously long wait for dermatologists as well, but I figured I'd just wait and get that appointment when I could.

Well, wonder of wonders, I got in to see the derm the following week! She prescribed the biologic yuflyma.

I heard from the pharmacy and the drug company - I have applied for trillium drug benefits but haven't heard anything from them yet.  It was recommended to me to ask the drug company for some compassionate coverage to get me started ASAP but they have not responded to that request.

I consider my self very very lucky to have gotten a diagnosis and treatment so quickly - I know many of you have had to wait years.

I have a long medical history involving 5 spinal surgeries and various complications so I don't know if that helped me get seen earlier or not! After lurking here and reading your posts, I realise I've had flares before.  I think because of my extensive surgical history it was always assumed my pain had more to do with my back problems and we didn't even consider investigating further.  By the time by spine got the all clear, my pain had magically resolved and I just went about my life.  This flare has definitely been the worst though and when it was everywhere, I knew something else was going on.  

After all the things I've been through and all the pain I've had in my life, this RA has been the WORST by a long shot. 

For work, I am a dog walker and average about 10km a day - I thought for a while I might not be able to keep working, but motion is indeed the lotion and I have been able to keep walking.  Honestly, the driving between houses to get to my dogs has been more difficult than the walking itself.

The steroid shot wore off pretty quickly.  I've since had two prednisone tapers.  My most recent Rx ran out last weekend and I was swollen and full of pain within a day already.

I hate feeling like I'm begging for drugs, but it's night and day for me with and without the prednisone. This flare I now realise has been going on now for about 5 or 6 months.

My next follow up was supposed to be in June but I called this past week and she was able to fit me in on Monday 🙏

 How long should it take the methotrexate and  hydroxychloroquine to work? I know it can be quite a while.

If you've read this far, thank you so much.  I appreciate the vast knowledge on this sub xx

So some context…my liver is a drama queen. She needs a fainting couch like a corset wearing victorian woman. (I’ve named my liver Beatrice.) Many medicines (even a single Tylenol dose) make my liver enzymes elevate; some (looking at you methotrexate!) elevate them to a dangerous extent. It’s the reason hydroxychloroquine is my only DMARD. Sometimes the disease itself hurts my liver. A little over a year ago, my biologic failed in a spectacularly dramatic way, leading to liver failure and damn near needing a transplant. The silver lining….the liver is very resilient; Beatrice can take a lot of abuse and still regenerate.

This brings me to my current dilemma. I was doing AMAZING on my newest biologic. And then I had an anaphylactic reaction to something in my iron infusion. My immune system still is dysregulated a couple months later, despite rounds of steroids and antihistamine cocktails. Now my ankles and MTP joints are showing significant inflammation. A flare is building. So my doctor and I are gonna go risky to try to save this biologic. By adding a DMARD. I’ve taken my first leflunomide pill. Leflunomide was the least liver-fucking of the previously used DMARDs; it’s the only one my doctor is comfortable trying.

We are approaching very cautiously. I have weekly labs scheduled for the next couple months. I’m still terrified. I have medical PTSD. Last year’s liver drama had me thinking I was going to leave my kids without a mom. So now I have the jumble of big thoughts: I can’t let this awesome biologic fail. Ouch, my feet and ankles. How TF can an allergic reaction lead to so many consequences? I hope this isn’t traumatizing the kids. Am I going to lose my hair again?…..all the noisy thoughts.

Rant over. Buckle up, Beatrice. It’s gonna be a wild ride.

Better, worse or same after treatment? 😮‍💨 😮‍💨😮‍💨 I have my days but also in peri! what is your thought’s?

Today marks a day I didn’t think would ever happen in my treatment plan. This morning, I took my usual Orencia, but today is exactly 6 months since I started it, and it’s continuing to work. All my previous meds worked for a month to 2 months tops…and never terribly well to begin with. Being where I am right now seemed like my Everest—an impossible ask for my body from a medication. But here I am.

I don’t know how long Orencia will continue working for me, but am so grateful it’s given me relief for half a year. It’s the best half a year my body’s had in many, many years. Just wanted to share my gratitude for what it’s given me to this wonderful group of people.

⏩ This is #4 in a 6-part series about why we have RA.

Current research points to hormonal imbalances as a catalyst for developing RA. There are so many diagnoses rooted in hormonal imbalance, and a lot of them are being studied as possible autoimmune conditions themselves.

⭐While these diagnoses are catalysts, you can't treat or cure RA by managing hormonal imbalances. Caring for your overall health is *every bit as important* as treating autoimmune conditions, but it's *not going to cure RA*.

Do you have a hormonal disorder (ie hypogonadism/TDS, polycystic ovary syndrome, endometriosis, Hashimoto's, Grave's)?

Have your RA symptoms changed with hormone therapy (ie HRT, gender-affirming, birth control) or changes (pregnancy/postpartum, aging, Peri/menopause)?

I used to draw a lot and do watercolors. I haven't in years though and I'm afraid of trying again because I fear it'll make my hands hurt too much. And right now my ability to draw still exists because I haven't proven to myself I can't yet so if I did try and I failed or was unable.... That would just kill me. Does that make sense?

I still want to try though but I want to improve my odds of doing well. Does anyone use any grip aids on pencils or stuff that make it easier that you would recommend? I don't want to waste my money on stuff that isn't going to help.

Hi guys. I’ve been in a bad flare up for over a month now. In March I was on methotrexate which greatly improved my symptoms but the side effects were really awful for me so in April I started on Azathioprine. It isn’t helped at all and a week ago I went to my rheumatologist who recommended getting on prednisone. I started on 20 mg for 4 days, and then moved to 3 mg for 7 days and am slowly tapering down. My rheumatologist promised immediate relief but I have been in the same amount of pain if not more. Everything hurts and on top of that I feel absolutely psychotic. I’ve been having horrible mood swings and right now am in one of those lows. I feel like nothing provides relief - advil and Tylenol don’t touch my pain. It hurts to even type this out and I feel so defeated. I’m open to any and all advice, someone please tell me this gets better

I have read that OT/PT was useful and asked PCP for referral. I am still working in optimizing medications with my rheumatologist but I would like to learn some skills to prevent injury and preserve functioning. I still function decently but my capacity fluctuates significantly. Just finished OT and sat in a room with geriatric patients and felt like the OT didn’t think I needed to be there (did learn some things.) She then wondered why I wanted PT. Am I crazy for thinking it might help or are they going to look at me and not be helpful because some days I function ok? (Joys of invisible disability in your 30s).

I have been struggling with knowing if my sleep is normal for RA or not. I find myself sleeping 10+ hours nightly, and if I don't physically force myself to get out of bed, I will sleep 12+. I have a very difficult time waking up in the morning, and I will frequently wake up, fall asleep for 20-30 minutes, have a weird dream, wake up again, and the process will repeat for a while. If I have a specific time I need to be awake, I need five alarms to be able to actually wake myself up. I take naps most days as well because I get too tired to function. I am constantly drinking coffee or energy drinks, and even then, it's not enough to keep me from feeling tired and fatigued.

I've been on infliximab for almost 6 months now (also have been on MTX and HCQ for over a year and a half at this point and gabapentin on and off for a decade, but the gabapentin predates this level of fatigue), and I've noticed a drastic decrease in physical symptoms... but the fatigue and sleepiness is still getting to me. I am exhausted every single day and struggling to stay awake.

Is this just what life is like with RA? Is everyone else as tired as I am? How are you all surviving it?

How do you define yourself?

I'm sick of the dizzy spells. This one is lasting longer than others. Is it the RA or the methotrexate, or both? I don't feel like I have an inner ear thing going on, so I'm at a loss. Anyone else have frequent vertigo and what do you do about it?

I'm pretty new here still. Been on methotrexate and hydrochloroquinine since early March, and they are working very well for my joint inflammation and pain. I have developed very sore quadruceps though! Owww! I've seen a physiotherapist, and she said my glutes, hips, and quads are all very tight and somewhat atrophied...I guess that's what happens when one lies around doing pretty much nothing for six months due to pain. I'm doing my physio exercises faithfully, but the quads are just not improving. They hurt all the time. I'm starting to wonder if this is part of the arthritis? Can RA affect muscles? I'd appreciate hearing from anyone who might have the same sort of thing happening.

Started RA treatment with HCQ in November, and Dr told me waiting 6 months to see how results were was best. But he also mentioned sulfasalazine helps with chronic sinus problems.

Well I was nearing the 6 month check up, but this spring has been awful and despite allergy meds I just wanted to breathe again! So we tried to switch.

And I’m not even a week in, my gums are bleeding awfully, I’ve even taken to adding a bit of peroxide and iodine to a water flosser to help heal the gums up.

I’m so dang tired all the time back to needed to nap, and I’m not healing! I’m back in muscular, nerve and bone pain, it’s really shown me how much the HCQ was actually helping.

Should I be taking iron with this stuff?!?

I got some dang bug bite and it won’t go away, relentlessly itches.

So I put a call back into the dr office asking if I can switch back already.

I’m open to advice, not just ranting! But yeah, kinda ranting a little…

What 3 good things happened to you last week? They can be anything at all!

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⭐ If you are thinking "my week was terrible", then please give this a try. If you can only think of 1 or 2, that's excellent.

It's cool if you don't want to share, but I hope you'll try it on your own. I did this during stressful time in my life, and it was helpful to "make" myself think about good stuff. It's nice to do 3 good things every day. Reading other peoples' good things might make you smile, too! I thoroughly enjoy the warm fuzzies and smiles 😊

This post is always pinned to the top of the sub on Tuesday, so you can add on whenever you want 😊

My Rheumatologist is switching me from Simponi Aria infusions to Hadlima(adalimumab) injections and I'm hesitant.

I was d/x'd with JRA at age 14 and have had several different diagnoses over the years, eventually landing on seroneg RA. I'm 34F. I am lucky enough to have minimal symptoms, but one big one was chronic uveitis that I developed about ten years ago. I actually had a cataract removed before age 30 due to excessive use of steroid eye drops before I FINALLY got it under control with Humira. When Humira became too expensive, I was switched to Simponi Aria infusions. They've worked wonderfully. No side effects and I haven't had an eye flare up since I started.

Today my doctor says let's switch back to injections because there are cheaper generic options now. "It costs insurance less" she says. But I'm wondering why she cares? It's working and I have no side effects. Yes, it's extremely expensive, but I pay only a small copay so why does she care what the insurance company pays? She also conveniently had samples to give me. Is this kickbacks for her? Why stop something that is working so well?

My main concern is of course the return of the uveitis, but secondly I am afraid of potential side effects. I agreed to try them but have spent some time thinking about it. Do I have to switch? Can she make me? Has anyone switched and had positive experiences? Don't really want to fix what isn't broken here.

Since I got diagnosed and started simponi aria infusions (immunosuppressant) I have been wearing a mask daily at work as well as when I go out to any stores or large gatherings. Recently my coworker (a nurse, we work in a doctor's office) told me I shouldn't be wearing my mask at all times or I won't build up antibodies/immunity to anything and I'll be weaker against illnesses. I thought that because I was on an immunosuppressant I should be very careful and masking all the time. Does anyone have any advice or experience in relation to this? I feel conflicted about masking less.

So, I’ve been on Kevzara for a few months now and wanted to ask those who are on it / been on it: within the two weeks of injection, does it run out before your next injection for you too? What I mean is: usually about 2-3 days before an injection, I feel muscle aches, joint pain (almost like coming down with a flu), with the tell that my throat gets swollen but clearly not sick. It’s like clockwork at this point. And then about 3 days after injection, it’s fully gone.

I’ve mentioned this to my doctor before but he didn’t really comment on it, aside from the fact that the medicine does seem to be working. But this brief period of it wearing off is really driving me up a wall. It’s hard to do anything during that time and I feel completely useless.

Anyone else deal with this?

Just wanted to introduce myself. I was just diagnosed with RA on May 8th. I had a feeling it could be but then again I felt like it probably wasn’t because all my other tests for autoimmune were coming back normal. So I joined this group to get familiar with RA in case I did get a positive result. While waiting for results, I was on Prednisone but it didn’t help much except more energy. Now I’ve started methotrexate but was told it can take 2 to 3 months to kick in. All she offered me was Prednisone again and I want nothing to do with steroids because of side effects. I only took it because I wanted my hand and wrist pain to go away along with the swelling. My hand is still swollen with no change. I am on Tramadol with my PCP. I asked her if we can increase it because I’ve been on 50 mg for over 8 yrs. Idk if she will now that I have RA diagnosis and if she will direct to my Rheumatologist. Anyone have experience or suggestions with this? The pain I had recently was unbearable! I tried to call my rheumatologist office but they didn’t call me back. There was no option to leave a brief message but I should have! I asked another question in the portal so idk if they assumed that’s what I wanted. I had no idea RA pain could get that bad so quickly. My symptoms started in December and it seemed slow but then it started to migrate to other areas and then into really bad constant pain with throbbing at times. I couldn’t use my hands at all for those few days other than the real necessities like eating, bathroom etc. but with lots of pain trying to do that. I can’t write or text without pain so I use the voice text now. Trying to adapt to all the new changes and it’s so hard. Some days I’m good and other days I feel like I’ve lost my independence and will it come back?? I was so relieved when those few days passed and I could use my hands again. Any tips would be greatly appreciated adjusting to RA changes.

Diagnosed in December '25 with seropositive ra. Back in March i had severe pain in my chest and lungs. I had an xray n was told there was some scarring in my lungs, that wasnt there in December, treated with pain meds, end of story. Now mid May im having the same god awful pain in my lungs, I had an xray done Friday and was told it was unremarkable. The scarring doesn't appear to have gotten any worse and there's no indication of pleurlisy. What in the holy heck is going on then and should I ask for a ct scan??? The pain is really only bad when I try to lay down and sleep, but it is unbearable. Ive been taking pain meds for 5 days and it hasn't gotten better at all.

Ive been on methotrexate since December, we recently maxed out my dose. I started at 15, went to 20, im now on 25mg weekly. We added plaquenil 2wks ago 200mg twice a day. Im also taking folic acid daily and 50,000 units of vitamin d once a week. And lately toredol for pain. Not sure if any of that is relevant but thats all the meds im taking.

Hey ya’ll, I’m really struggling with this and I don’t know what to do.

I was diagnosed with RA when I was 22, I turn 29 in a few weeks and I’ve been on the waiting list for a total knee replacement for 2-3 years. It’s been so long because I haven’t been healthy enough for the surgery according to my surgeon.

But I am now, but barely. I’m really, really frightened. Like whenever I think about it, I start crying uncontrollably. I don’t even know what I’m scared of, I’ve had surgery before but this is a lot bigger than anything I’ve had done.

I’m mainly worried about infection I think. I know to stop my meds, and I’ve lost 15 kilos in preparation (with mounjaro to help of course) but it just doesn’t feel like enough. I feel under prepared for this despite knowing it’s coming for years. I’ve been too sick to exercise for years and I’m very de-conditioned.

I’d love to hear anyone’s experiences or advice with total joint replacements or similar surgeries! Thank you ❤️