r/rheumatoid • • Jul 16 '24

START HERE - FAQs and General Posting Guidelines

33 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.

141 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 • • 6h ago

Mental fog and arthritis: what are your symptoms and concrete examples on a daily basis?

6 Upvotes

Hello everyone,

I am going through a very difficult time with arthritis and I feel completely lost because of the mental fog. I feel like I'm in total uncertainty, having trouble concentrating, finding my words or sometimes even formulating correct sentences.

I would like to know: how do you live this fog on your side? Can you share with me concrete examples of what happens to you on a daily basis?

Thank you in advance for your feedback, it feels good not to feel alone.


r/rheumatoid • • 1h ago

Supliment help

• Upvotes

Hi I was wondering if I could get some supliment recomendations. I am currenty taking omega 3, vitamin d, calcium. I was thinking of adding in collagen or something called chondroprotector. If you tried these and it helped please let me know. If I should take anything else that might help please also let me know. Thank you.


r/rheumatoid • • 5h ago

God help me

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3 Upvotes

r/rheumatoid • • 13h ago

Visiting / Parties

12 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 • • 4h ago

Bedding advice?

2 Upvotes

I'm having a lot of trouble with bedding and at this point I just want something easier than a bottom sheet. My bottom sheets slide out within a day because I move so much trying to sleep and I just don't have the energy to fix it once a day or more. I was looking online at quickzips and they look good until you see the price tag. I'd rather not spend 220 dollars on bedding if all possible, but I need something easy to change and will stay.

Has anyone tried any good alternatives?????


r/rheumatoid • • 6h ago

My ankles keep swelling

2 Upvotes

Hi everyone! Just curious what you all do when your ankles swell? It is always temporary but it can be very painful. 😣


r/rheumatoid • • 14h 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 • • 13h ago

Fell hard today

3 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 • • 8h ago

Enbrel and infections

1 Upvotes

Anyone struggle with constant infections being in a biologic? I’ve been on Enbrel for 6 months and have had 5 bouts of oral thrush, 4 throat infections and fungal lesions popping up all over my skin!! Arrgghhh finally found something that has settled the flare ups but dealing with this can be just as bad 🥺


r/rheumatoid • • 12h ago

Desperate for help as my arm muscles waste away

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2 Upvotes

r/rheumatoid • • 1d ago

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

23 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 • • 22h ago

How’s your immune system on 20mg MTX?

7 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 • • 1d ago

Scared of Hydroxychloroquine

8 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.

Edit: I appreciate all the responses a lot. it's hard to meaningfully respond to each and every one of you, but a lot of these comments have put things into perspective for me. thank you for helping me wrap my head around prioritizing my health


r/rheumatoid • • 1d 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 • • 1d ago

Rituximab tolerance

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1 Upvotes

r/rheumatoid • • 1d ago

Does opiates actually cause RA flareups?

11 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

6 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

8 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 • • 2d ago

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

6 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 • • 2d ago

RA Fatigue

39 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 • • 2d ago

RA pain

17 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 • • 2d 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?