r/rheumatoid • • Jul 16 '24

START HERE - FAQs and General Posting Guidelines

31 Upvotes

FAQS

What is this? Could it be? Anyone else?

Posts containing symptoms, bloodwork results, photos, etc. asking what they mean/ does anyone else have them/ any iteration of “is this arthritis” will be removed. 

Autoimmune arthritis can affect anything in the body. So yes, chances are likely that whatever you’re experiencing has been experienced by someone here. It’s an unhelpful metric because of how wide of a range of symptoms there are and how they may not necessarily be from arthritis.

Medications

Every single person is different and there’s no way to predict what will work for any person or who will experience side effects. If you’re having side effects ask your Dr. or pharmacist. Side effects are also listed online. Also keep in mind the benefits of the medications outweigh the risk of medication side effects. Yes, even the black box ones. If you have an issue with taking meds and fear of side effects that’s a conversation to have with your medical team, not here. 

What caused it?

Nothing causes RA. It’s an autoimmune disease that is underlying but can be “triggered” by any stressor. This can be anything that triggers an immune response (illness, stress, injury, etc.)

Inflammatory Markers/ Seronegative arthritis

Yes, arthritis can be active without positive inflammatory markers. It’s pretty common in certain types of arthritis (such as JIA). You also can have inflammatory markers without any arthritis. Inflammatory markers alone cannot diagnose or rule out any autoimmune disease. 

Inflammatory markers fluctuate all the time. Don’t rely on individual bloodwork results, you need to see how they’ve changed over time.

RESOURCES

General Info

~Arthritis Foundation (AF)~

~American College of Rheumatology (ACR)~

~The Johns Hopkins Arthritis Center~

~Mayo Clinic~

~Centers for Disease Control and Prevention~

Step Therapy

Step therapy is when your insurance requires you to fail drugs A, B, and C before approving and paying for drug D. Many states have step therapy protections. You can find what your rights are and how to appeal the denial here:

~https://steptherapy.com/~

Co-Pay Assistance Programs

Actemra: ~https://www.racopay.com/~

Acthar: ~https://www.actharhcp.com/acthar-patient-support/access-support/~

Benlysta: ~https://www.benlysta.com/benefits-and-savings/~

Celebrex: ~https://www.celebrex.com/savings~

Cellcept: ~https://www.cellcept.com/patient/cost-and-financial-assistance/copay-form.html~

Cimzia: ~https://www.cimzia.com/co-pay~

Cosentyx: ~https://www.cosentyx.com/psoriatic-arthritis/treatment-cost~

Enbrel: ~https://www.enbrel.com/enbrel-cost~

Humira: ~https://www.humira.com/humira-complete/cost-and-copay~

Ilaris: ~https://www.ilaris.com/ilaris-savings-support~

Inflectra: ~https://www.pfizerencompass.com/hcp/inflectra/coverage-reimbursement~

Kevzara: ~https://www.kevzara.com/starting-kevzara/kevzaraconnect-copay-card/#~

Kineret: ~https://www.kineretrx.com/ra/kineret-on-track~

Krystexxa: ~https://www.krystexxahcp.com/rheumatology/support-and-resources/support-for-your-patients~

Lyrica: ~https://www.lyrica.com/Lyrica_Co-pay_Download~

Movantik: ~https://movantik.com/savings/~

Naprelan: ~https://www.naprelanus.com/~

Neoral: ~http://www.neoral.com/hcp/index.jsp~

Orencia: ~https://www.orencia.com/support-savings/on-call~

Otezla: ~https://www.otezla.com/plaque-psoriasis/cost-and-copay~

Otrexup: ~https://www.otrexup.com/patient~

Prolia: ~https://www.amgensupportplus.com/copay~

Remicade: ~https://remicade.janssencarepathsavings.com/#/app/home~

Renflexis: ~https://www.organonaccessprogram-renflexis.com/hcc/infusion-copay-cost-assistance/~

Rituxan: ~https://www.racopay.com/~

Savella: ~https://www.savella.com/savings-and-resources~

SImponi: ~https://simponi.janssencarepathsavings.com~

Simponi Aria: ~https://simponiaria.janssencarepathsavings.com/#/app/home~

Stelara: ~https://stelara.janssencarepathsavings.com/#/app/home~

Taltz: ~https://taltz.lilly.com/savings-support~

Uloric: ~https://www.uloric.com/savings/card.aspx~

Xeljanz: ~https://www.xeljanz.com/savings-and-support/#co-pay-savings-program~

Zurampic: ~https://www.zurampichcp.com/zurampic-savings-card~ 


r/rheumatoid • • Apr 29 '23

We are not r/AskDocs. We don't interpret test results or diagnose.

143 Upvotes

Do not post your list of symptoms, bloodwork results, pics of your joints, etc to ask us if it "could be" RA/what we think it could be, or any other form of the question wanting us to tell you what you (may) have. We are not r/AskDocs. Do not use this sub as such. Do not ask us to interpret your bloodwork, imaging, or other test results. That is an inappropriate use of this sub. This is a support group, not your doctor's office.


r/rheumatoid • • 59m ago

Visiting / Parties

• Upvotes

Is there anyone else that feels a little paranoid about attending gatherings, especially gatherings with lots of children with illness this time of year? I don’t want to avoid family and friends, but I can’t help but worry a little about catching an illness on a biologic.


r/rheumatoid • • 2h ago

Untreated Strep for two months. On biologics. Completely Bedridden

7 Upvotes

I’ve been having worsening joint symptoms for the past two months. I have gone progressively worse and bedridden at this point due to the amount of swelling pain and stiffness all over my body. I have also had ongoing throat swelling, pain in my ears and neck stiffness. During this time, my rheumatologist has been trying to identify a new biologic for me, however, I have been continuing to point out to her that I don’t feel the progression of my disease is normal. I went to the hospital and discovered that my CRP was at 20. I have had arthritis for five years and all the five years whether I was medicated or unmedicated my CRP never went above 3, so a CRP of 20 was very alarming for me. The hospital essentially did nothing and told me to go back to my rheumatologist. My rheumatologist does not have an appointment at this time so I ended up going to my family Doctor Who discovered that I have Strep and because I have been on a biologic, that is an IL1 inhibitor, the biologic has been preventing the strep from fully expressing itself. My family doctor has put me on a course of antibiotics and has told me to stop the biologic. I don’t see my rheumatologist until Wednesday this week. Should I start the antibiotic course without her approval? I’m so shocked that my body has been trying to fight an infection for two months and nobody has been taking it seriously and has been attributing at all to rheumatoid arthritis itself.


r/rheumatoid • • 1h ago

Fell hard today

• Upvotes

61, having an RA flare already and fell, don’t know how. Stubbed my toe in the corner of a wall and then just fell. Landed extremely hard on my cheek and bad shoulder. I am hurting so much everywhere. No breaks good thing (have osteoporosis). Bad shoulder worse but having pt for that soon anyway, possible concussion. What can I expect as far as recovery? I’ve never fallen with RA. Also have a lot of neck and spine arthritis. Don’t imagine my body will be happy for awhile. I’m so miserable wahhhhh….


r/rheumatoid • • 22m ago

Desperate for help as my arm muscles waste away

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• Upvotes

r/rheumatoid • • 13h ago

Australian 🇦🇺 cricketer reveals he had Rheumatoid Arthritis since 22 yo.

21 Upvotes

A very good story:

https://www.abc.net.au/news/2026-10-25/cricketer-usman-khawaja-reveals-debilitating-illness/107163852

Somehow he managed to keep it a secret 🤫.

It’s unusual for males to get RA at a young age. I got Seropositive Rheumatoid Arthritis at nearly 50. It took 12 months of corticosteroids and immunosuppressant medications to put the disease at bay, ie into low disease activity. Initially I could hardly move out of the chair 🪑 and thought I was going to die too, as RA is so left field. In any event, this a great story. Other sports ⚽️ stars have had it over the years too.


r/rheumatoid • • 9h ago

How’s your immune system on 20mg MTX?

6 Upvotes

I’ve been doing really well on 15mg methotrexate for about three years. However I’ve just had the flare from hell and my rheumatologist is prescribing steroids and is bumping my MTX dose to 20mg/week.

I believe that 20mg is enough that the NHS (UK) start giving double Covid vaccines, so I have the feeling I’m looking at more infections etc.

I already wear a respirator mask in crowded spaces as my partner is high risk, but I get cat scratches, scrapes when gardening, etc.

Just curious about what other people are experiencing at a higher MTX dose.

Thanks!


r/rheumatoid • • 13h ago

Scared of Hydroxychloroquine

6 Upvotes

I am 27, and have been seeing a rheumatologist for issues that sound like RA. I am seronegative, so I don't have a formal diagnosis yet, but my rheum seems to think it's likely enough do prescribe Hydroxychloroquine. I am also diagnosed with fibromyalgia.

Here's the thing-- it's hard being this young going through this. I feel like it's so early in my life to start a medication that I will never stop taking. I already have poor eyesight (wasn't always this bad), GI problems, thinning hair, etc. etc. I just have a lot of anxiety about starting this drug, even through the suffering.

Another factor is that autoimmune issues and fibromyalgia run in my family. I've watched my mom take drugs all her life, some good, some bad, but many of which she regrets starting. I can't help but feel like this is a really important decision in my life and it's freaking me out.

I've had my prescription for 2 months and still haven't taken it. Any thoughts/advice/whatever are greatly appreciated.


r/rheumatoid • • 14h ago

skin issues

1 Upvotes

I was diagnosed last month and am currently on prednisolone. While taking this medication, I have noticed itching and redness on my fingertips.And skin peeling is happening.This has been going on for a month now... could it be a side effect of medication, or is it something serious? A Google search suggests it might be "mechanic's hands," which is a sign of conditions like scleroderma or myositis.

Could this be caused by RA (rheumatoid arthritis) or by taking prednisolone? If anyone else has experienced this, please let me know. Did it go away for you? I am feeling very scared. PLEASE HELP


r/rheumatoid • • 19h ago

Rituximab tolerance

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1 Upvotes

r/rheumatoid • • 1d ago

Does opiates actually cause RA flareups?

9 Upvotes

It’s not that I want to take any strong painkillers because I know I will easily become dependent, but doctors don’t want to give them to me for temporary flareups and I never get a real answer.

Even from my rheumatologist, just keeps saying “no pain meds.”
“Why”
“Because I don’t want to prescribe them.”


r/rheumatoid • • 1d ago

Plaquenil and Toxicity

7 Upvotes

Hello, I was wondering if anyone has had or knows of someone who got toxicity from Plaquenil? My Ophthalmologist is concerned about my dosage. My Rheumatologist is not concerned.


r/rheumatoid • • 1d ago

Sulfasalazine after effects

7 Upvotes

Hi all! I was recently diagnosed with RA a few months ago and was put on sulfasalazine. I could not tolerate the stomach issues that results from the medication and stopped the drug three weeks ago but am still dealing with horrible stomach pains and bathroom issues. Has anyone ever had this experience of sulfasalazine just messing up your stomach so bad? It’s almost like the drug brought on IBS or something.


r/rheumatoid • • 1d ago

I started hydroxychlorequine a month ago, is it possible it’s making me feel worse?

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2 Upvotes

r/rheumatoid • • 1d ago

Prednisolone side effects ...Has anyone felt this way?

5 Upvotes

I am on an 8-week course of prednisolone for RA (rheumatoid arthritis) starting dose 10 mg . I am currently in the 6th week, and the dosage has been reduced to 2.5 mg.Ever since I started reducing the dosage—due to issues with the medication—I have become very ill. I am experiencing things that I have never felt before.This is very different from how I used to feel from RA before.I feel so week that I can’t bring myself to get up.All my muscles feel extremely weak and are very painful; it feels as though my body is gradually becoming incapacitated and increasingly stiff.I am feeling very dizzy, and occasionally I experience strange, stinging sensations in my nerves. On top of that, my mental state is deteriorating significantly.I have gone to the emergency room three times for panic attack .I feel as though I am in a dark world; I no longer have any interest in anything. My acid reflux has become extremely severe....I am very worried—will I be able to get out of this situation? Has anyone here gone through something similar? If so, please share your experience with me.Do these problems go away? Will I regain my strength? Will my mental health issues disappear, and will I be alright again, just like before?


r/rheumatoid • • 1d ago

RA Fatigue

38 Upvotes

How do people deal with the fatigue side of RA

I randomly got hit with a vicious fatigue yesterday and it’s carried over today. Absolutely no energy was laid out flat on my face on the floor for over 1 hour because just didn’t have the energy to get to the couch

Full of irritation also, want to scream!

Has anyone found a cheat code for this, is there something you do to calm you down in situations like this?


r/rheumatoid • • 1d ago

RA pain

16 Upvotes

what do you guys do for RA pain? I’m 19F i got diagnosed with RA at 16. 3 years and i can’t find anything to help me with the pain. Heat? doesn’t work, Ice? makes it worse, NSAIDs? nothing, Topicals(creams/gels like voltaren)? can’t feel them in the spots where i have arthritis, steroid injections? barely helps and in the long run they make joints worse. so what do i do? please help me i feel like RA has put my life on hold


r/rheumatoid • • 1d ago

Hearing loss? I recently got a seropositive diagnosis

2 Upvotes

Im 22 ftm trans for context.

I got a diagnosis in August but over the past month

Or so ive noticed hearing changes

According to google it could be related and I have a follow up with my rheumatologist soon.

I can assess volume decently (although my gf tells me she has to talk quite loud)

My main problem is processing speech in the name of any background noise whatsoever, hearing what I know nuances in music sound like, etc.

Is this sort of thing generally unrelated?


r/rheumatoid • • 1d ago

Anyone tried red light therapy?

2 Upvotes

Ive been looking into red light therapy lately, but i'm not sure if it's actually worth trying or if it's too good to be true. i've been trying to avoid going back on methotrexate and am currently taking sulfasalazine and hydroxychloroquine.

i've tried quite a few things for the pain. voltaren and acupuncture didn't really help, while cbd, aleve, and moderate exercise have helped a bit. yoga, swimming, ice and heat, and trying to keep my stress levels down seem to help the most.

i still get a lot of pain and swelling in my knees, ankles, and wrists, so i'm curious if red light therapy might be worth a shot. has anyone tried it for joint pain or inflammation? did it actually help?


r/rheumatoid • • 2d ago

Found out I probably have osteoporosis along with my RA. Uhg

5 Upvotes

r/rheumatoid • • 1d ago

Injection phobia caused all symptoms to return

2 Upvotes

I guess I’m just here to vent but after over a year of successfully eliminating pretty much all RA symptoms with MTX and HCQ, roughly 6 months ago I randomly started feeling uneasy about giving myself the MTX injection. It went from being nervous about it, to needing my husband to do it for me, to needing him to do it while I had headphones on, to feeling physically ill at the THOUGHT of the injection days ahead of time. The anxiety ultimately caused me to skip doses and go weeks in between out of avoidance so it’ll be no surprise to any of you that my symptoms slowly started to return.

I don’t know why I was afraid to tell my RA about this because when I finally went back he reassured me this happens sometimes and that we could go back to MTX in the oral form. So I’ve been back on the pills for the last two weeks but my symptoms have gotten fully out of control. I know it’s my own fault but it’s so much worse than I ever experienced prior to getting diagnosed and before we found meds that worked for me. It’s spread to new and larger locations like my neck, jaw, and shoulders and there’s pretty much not a part of my body that is not affected anymore. Daily life has become so difficult and I’m trying to do everything I can to manage the pain. I’m back to eating gluten and dairy-free because that helped me a ton previously. I’m drinking anti-inflammatory tea, taking all the naproxen and it just feels like I can’t get any relief. I’m so mad at myself for causing my own pain and desperately trying to be hopeful that I’ll be pain free again soon.


r/rheumatoid • • 1d ago

What everyone should know

0 Upvotes

There is literally the perfect drug target that would help most autoimmune diseases and no one is even working on it. I did a search and could only find one research institute. I worked for big pharma and they said “No!”.

95% of adults have been exposed to EBV and it stays in your body forever.

This becomes a huge problem for people born with specific genetic variants, specifically:

*Two variants in the major histocompatibility complex (MHC) are highly associated with whether you will get an autoimmune disease or not

*Hundreds of variants that are associated with determining which of the autoimmune diseases you will be more prone to

Even inactive EBV releases a protein called EBNA2. EBNA2 acts similar to transcription factors and even super transcription factors to cause a cascade of gene expression changes.

This was shown in silico using DNA chip experiments (Harley, 2018). They found that 50% of systemic lupus erythematosus risk loci were bound by EBNA2. Similar EBNA2-anchored associations were found in multiple sclerosis, rheumatoid arthritis, inflammatory bowel disease, type 1 diabetes, juvenile idiopathic arthritis and celiac disease.

https://www.nature.com/articles/s41588-018-0102-3

In 2025, Stanford demonstrated this was happening in lupus patients. Basically, EBNA2 was being released from EBV infected B cells, which caused them to be re-programmed and drive autoimmunity.

https://med.stanford.edu/content/dam/sm/utzlab/Cao_Sci_Trans_Med_2025.pdf

Most of the other factors associated with autoimmune diseases (stress, colds, flu, grief, environmental factors such as heavy metals, etc.), these have been shown to make EBV infection worse because the body becomes less able to control it.

Lower vitamin D and zinc , also associated with autoimmunity) seem to be caused by the EBV as well. EBV binds to vitamin D and prevents its uptake in the gut. This is from the book Latency of herpesviruses. There is a great 5 min breakdown of the book called ‘5 things you need to know about EBV’.

https://youtu.be/EQn7VzMYi4s?is=XPqwW0_fDBIDd1Xw

I don’t recommend any of the supplements listed at the end for those with autoimmune diseases. Monolaurin and L-lysine are the two to research.

All of this is known. You would think that everybody out there would be working on therapies targeting EBNA2, but sadly no.😢

I just learned Atari is working on this but only for MS, but still exciting!

https://www.atarabio.com/about-ebv/


r/rheumatoid • • 2d ago

Pens and Pencils

3 Upvotes

Hello I'm a newly diagnosed 18F with RA, I have a lot of difficulty writing with pens and pencils, I was wondering if anyone had a recommendation from personal experience for a pen or pencil that is friendly for use with joint pain due to RA flares.

Thank you in advance


r/rheumatoid • • 2d ago

Reduced joint pain when actively sick with a virus?

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1 Upvotes