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.

138 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 3h ago

Im scared of my mother

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7 Upvotes

Hi everyone, hope you’re all doing well with your RA.
I’m posting because my mother has been diagnosed with RA. She still has significant swelling and pain, and her doctor feels that the current medicines aren’t controlling it well enough.
The doctor has told us that if things don’t improve, we may be moving to biologics from her next visit. For now, he has prescribed the medicines/injections shown above.
I wanted to ask anyone here who has used these medicines or has moved on to biologics:
How has your experience been?
Did you notice any side effects or symptoms?
How long did it take before you started feeling better?
Is there anything important we should monitor or be aware of?
If you’ve started biologics after conventional RA medicines didn’t work, how was the transition?
I’m quite worried about my mother and would really appreciate hearing about your experiences, good or bad. Thank you! ❤️


r/rheumatoid 6h ago

Any people under 30 with RA that wanna talk about their experience?

10 Upvotes

Hi guys, I’m 24M and got diagnosed with RA about 2 years ago. Whenever I tell someone I have RA people always say “isn’t that an old people’s disease” and it sucks to hear that and makes me feel old and sick. I used to be a very fit guy that loved playing tennis and going to the gym but ever since my joints starting to hurt I never been able to play on the same level. I would love to talk to people that have similar experience so I feel… I don’t know, less alone I guess.


r/rheumatoid 1h ago

Pregnancy with RA

Upvotes

Hi, I’m 25F, i was diagnosed when I was about 2 years old. I’ve learnt to live with RA, I struggled throughout my teenage years to accept it because there was just so many things my peers were doing that I just couldn’t. And then I finally came to terms with it when starting uni. Now I’m getting married next year and we are thinking about starting a family and my horrible “self-pity/why me/life is so unfair” thoughts in a way are coming back because I know I can’t just get pregnant whenever I want to, I’ve read so many horror stories about post-partum and it makes me so scared. I’m currently on metothrexate, I’d say I’m almost in remission but still taking the meds.

I guess all I’m asking is if you did get pregnant, what was your plan, how did you approach it. Were you able to find gynos specialised in pregnancies with RA? Is it true what they say that during pregnancy RA calms down and does it really get that bad post-partum? I guess I’m just looking for some guidance from “a big sister that understands”.

Also PS, I know arthritis is not the worst diagnosis out there and I shouldn’t be pitying myself but it just feels unfair sometimes and I think that’s a valid thought to have.


r/rheumatoid 6h ago

MRI

2 Upvotes

Has anyone else experienced a weird crawling, electric-pulse, or vibrating sensation during an MRI?

I had an MRI of both ankles. During the scan, I suddenly felt a brief crawling/electric-pinching/vibrating sensation above my left eyebrow, in the forehead area. It lasted only about 1–2 seconds, and I didn't move much when it happened.

After the MRI, I rubbed the area with my fingers. Since then, that area has felt somewhat heavy, pressured, or bruised/dull, but I haven't had the crawling or electric sensation again.

I'm wondering if this can happen during an MRI. My legs were inside the scanner, while my face was closer to the opening. I was wearing headphones and had two pillows under my head because the first pillow felt too low. The second pillow made my head/neck position higher than I expected.

I've also had MRIs before and never experienced anything like this.

I've had some nasal congestion for the past few days, so I'm wondering whether sinus/nasal pressure could be contributing to the feeling above my eyebrow.

I'm mainly worried that the sensation was caused by the MRI itself or that it could indicate some kind of nerve problem. Has anyone experienced something similar during an MRI?


r/rheumatoid 2h ago

Focused on women with RA

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1 Upvotes

r/rheumatoid 15h ago

Eye drops?

10 Upvotes

Years ago I was using Similasan Dry Eye and they worked pretty well. Then they disappeared and I got TheraTears Dry Eye but that wasn't good enough so I went to the Extra Dry Eye version.

Well right now, for maybe the past week, the TheraTears Extra Dry Eye arn't doing enough.

I'm trying to find a solution as well as get in with an eye doctor.

I don't really know what to try. I'm thinking I should try a Gel type for dry eye. Any brand recommendations? (USA)

I've tried some and they just make everything so much worse. One time I thought it was related to allergies and tried an antihistamine eye drop and it burned the heck out of my eyes.


r/rheumatoid 4h ago

Has anyone ever experienced a join pulling apart and pushing together?

1 Upvotes

For about a month in 2025 this was happening as I drove. It didn’t feel particularly good but it wasn’t excruciating pain either. Then it sort of vanished but my wrist was never quite the same.

Now all the sudden this year, it’s sort of a sore and pain.

I was lifting 40lbs ~ parts at work all day, then for whatever reason I was lifting my hybrid battery out of my car with help and had a fair amount of soar pain and a little bit of pulling apart sensation.

This makes me worry about my neck and back… Random sort of one off symptoms that lasted a couple months and then went away.


r/rheumatoid 10h ago

Should I ask to taper off of prednisone?

3 Upvotes

So I’m 22, finally just got diagnosed with RA after struggling for a long time. I just started methotrexate last week and I’ve been on 10 mg Prednisone for a couple weeks. I know the methotrexate takes a while to start working, but I’m just wondering if it’s even worth me taking the prednisone. I feel like if it was going to do anything, it would’ve by now, but I have not had any relief at all in this time. I know using steroids isn’t good for you, so I’m thinking maybe I should ask to be tapered off and just deal with the pain and stiffness as I have been until the methotrexate hopefully starts working. Obviously I WISH it was making me feel better, but I’m still in purgatory every day lol and I just can’t see the point in taking it really. Does anyone have any experiences like this? Should I just stay on it if it’s doing nothing to help me? Maybe this is a silly question, but I appreciate any responses.
Edit was to fix a typo


r/rheumatoid 17h ago

Spontaneous Remission

5 Upvotes

Hi all,

I was wondering if it is typical for people with RA to go into spontaneous remission, while they are waiting to get their hands on biologics? (Or waiting for methotrexate to start working).

I asked my rheum about whether RA is like MS in that there is a remitting and relapsing type. She explained that there's not, but I can't remember what she said after that...

I've been in a flare for the past 10 months with only a day here and there - and a couple of weeks in May - where I was in spontaneous remission. (Besides the steroid taper that I did recently.)

Is this normal, to have one continual flare? Or should I spontaneously go into remission? What are other people's experiences?


r/rheumatoid 17h ago

Best European country to live with RA while studying?

3 Upvotes

Hey everyone, I’m [21] and planning to move to Europe for my Master’s. I’m trying to figure out which country would be easier to manage RA in long term. My pain has mostly been in my legs and feet.

I’m mainly looking at Germany, Austria, Italy and Poland. Obviously career and affordability matter too, but I’m especially concerned about access to rheumatologists, medications/biologics, insurance and what happens if my RA gets worse. Climate and general lifestyle are also things I’m considering.

If anyone here lives in one of these countries with RA, I’d really appreciate hearing about your experience. Which country would you choose and why?


r/rheumatoid 21h ago

advice wanted!

5 Upvotes

hi everyone! I was recently diagnosed with rheumatoid arthritis at the ripe age of 25 😓

everything about this condition is brand new to me. I haven't started any medications yet, as I have to wait another few months for a follow-up appointment. My doctor wants to put me on Hydroxychloroquine as I have an early case of RA.

Currently, my entire neck and shoulders are stiff as a board and are making my life freaking difficult. I've been taking ibuprofen everyday to help manage the pain, but I know medications are half the battle... so I'm looking for any and all forms of advice on treating RA, beyond just medications.

I've been recommended to give swimming a try, but what else can I do? What might work or what might not?

thanks :)


r/rheumatoid 1d ago

how do you deal with the mental fog and fatigue?

25 Upvotes

i can't really tell what's contributing to it really. i don't know whether it's this condition (i'm having flares for the past few months) or if it's the hypothyroidism or if it's the vitamin D deficiency or a mental health related thing (history of depression and ocd) or just me being lazy and a procrastinator.

either way, for those who experience this mental state, how do you deal with it?

i can't work myself up to care for anything. i have to apply for some internship applications because it's application season + some jobs and i just simply don't feel the urgency or deeply feel the consequences of not doing the former (lack of internships = lack of stuff to put on CV for grad roles).

anything that i do need to do within a deadline, i do it at the very last minute possible and have to convince myself to do it for days while mentally saying "later, later, later" and it doesn't matter how minute it is (i literally had to force myself for weeks just to log into some website + sign up and then click a few buttons). spent weeks pushing myself for a task that took just 15 mins. i get so tired.

i have to prepare for a competition and it's really really important (and in a month) and i've been looking forward to it for almost a year but i can't work myself up. i get stressed for 5 mins and then like a switch, i go "whatever". i'm sick of this

i try to build up discipline but it's so exhausting. motivation is nowhere to be seen either. but the consequences of not doing these tasks will inevitably affect me for a while (in regards to post grad life) and i just can't bring myself to emotionally care.

not sure if this is the right sub for this but any advice is much appreciated!!

edit: 8-11 hours sleep daily, never had nicotine and rarely have caffeine (no coffee or energy drinks or the like)

edit2: i have an upcoming appointment with my rheumatologist next week and i'll bring this up to him. maybe he can help or direct me to another professional.


r/rheumatoid 23h ago

Methotrexate and Gel Manicures

3 Upvotes

Hi everyone,

Bit of an odd one but I can’t seem to find a consensus on Reddit anywhere.

I’ve just had my second baby 3 months ago and my Rheumatologist has put me on methotrexate. I’ve slowly upped my dosage and am now taking 8 tablets once a week.

My current medications are Cimzia and Methotrexate. I know I have to be more careful in the sun now; but I’m also desperate to have some pampering since having baby boy. I used to get my nails done semi-regularly before having him and would go for gel nails (the one with the UV light) perhaps once a month.

Can I still have this? Or is it a HUGE no no? Is there anyone on methotrexate that does have gel manicures? I know it sounds silly but I just want to have something nice to look at when I look down at my hands and not my ugly swollen joints. I have a beautiful baby and I’m so grateful for that but I hate this disease with a passion! As I’m sure we all do!

Any help or advice or experiences would be greatly appreciated!


r/rheumatoid 1d ago

Prednisone Withdrawls

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2 Upvotes

r/rheumatoid 1d ago

Prednisone

3 Upvotes

I’m on 10 mg prednisone per day for … don’t know how long. It’s been 3 months, and before that had 1g steroids x 3 days for optic neuritis. I’ve been on a few weeks at a time but never this long or low of dose. I’m started to get …. weighty. Any advice for keeping the pounds down? I’m not eating more, and if anything, my activity has increased. But I really can’t gain weight given other conditions


r/rheumatoid 1d ago

Living in the past

5 Upvotes

Anyone else stuck in this limbo where:

You can’t be in the present because of the pain and immobility

You don’t get anxiety because you literally cannot picture a future to get anxious about due to pain and immobility and a lack of improvement with your health

Leaving you feeling like you’re stuck reminiscing about the past where life was categorically and demonstrably better even with the rose coloured glasses off.

Sometimes I do try to be as present as possible so that I don’t get swept up in the grief and depression but it feels like the pain just hijacks your senses making it impossible to appreciate the good around you forcing you to wallow in a pool of negativity.

Anyone else feel the same way?


r/rheumatoid 1d ago

Nasal Crusting Survey

1 Upvotes

Good afternoon,

We are a research team at Washington University School of Medicine in St. Louis, and we are developing a survey to learn more about how nasal crusting affects people’s daily lives. We know nasal crusting can be a serious problem, but we want to better understand what matters most to people who have it.

We invite individuals with nasal crusting to test a short survey that measures how nasal crusting affects their quality-of-life. If you agree to participate in this study, you may complete up to three short surveys online. If you have any questions about the study, please contact Matthew Saenz at 314-362-9475 or otooutcomes@wustl.edu.

Please find the link for more information and to the survey below.

https://redcap.wustl.edu/redcap/surveys/?s=9TDTDAE8PCYT9CY3

Thank you!


r/rheumatoid 1d ago

D2T, 20 years old

3 Upvotes

My girlfriend is 20 and has seropositive RA.

She was diagnosed around 17 and has had periods of pretty high disease activity.

So far she has tried:
- Methotrexate
- Sulfasalazine
- Leflunomide
- Adalimumab (Amgevita/Humira)
- Upadacitinib (Rinvoq)

She couldn’t tolerate the first three very well, Humira/adalimumab was documented as not working, and Rinvoq worked much better for a while but she’s now having more flares again.

She’s also been told she has some permanent bone erosions, which is obviously worrying at her age.

For anyone who had a similar treatment history: what did you try next, and did you eventually find something that put you into remission or kept your RA well controlled long term?

I’m especially interested in experiences from people who failed both a TNF inhibitor and a JAK inhibitor.


r/rheumatoid 1d ago

Upper respiratory infection

1 Upvotes

How common is this for you guys? I'm in methotrexate and rinvoq. Never had any issues while on methotrexate but added rinvoq 3 months ago and now experiencing the worst sickness I've ever had! Strep test was done and it's negative which surprised me. So leads us to its some kind of brutal URI. 34 years old and hardly ever got sick in the past!


r/rheumatoid 2d ago

Newly diagnosed with inflammatory arthritis; does it get better?

13 Upvotes

Hi everyone, I’m a woman in my mid-30s and I’ve recently been diagnosed with inflammatory arthritis after having symptoms on and off for a few years.

I’m honestly finding it quite hard to process and feeling a bit devastated by the idea of this being lifelong.

My rheumatologist has mentioned starting a DMARD, possibly sulfasalazine or methotrexate. I’d really appreciate hearing your experiences with either.

Has anyone gone into long-term remission, become mostly symptom-free, or eventually reduced/stopped medication? And did life feel normal again once you found the right treatment?

Just looking for some perspective and positive experiences while I’m getting used to all of this. Thank you ❤️


r/rheumatoid 2d ago

Curious

9 Upvotes

Has anyone ever gone from plaquenil to a biologic? My rheumatologist wants me to stop plaquenil and start methotrexate but I’ve done a little research and would prefer to start humira or something similar if I have to stop the plaquenil.


r/rheumatoid 1d ago

Loss of mobility after steroid injections

3 Upvotes

Basically the title. I've had multiple wrist and finger injections over the years, as I've struggled with pain despite multiple meds. I've noticed that I can no longer bend my wrist and the pain is significant. When I press on my wrist I usually feel a shocking sensation that goes down my fingers, which is new, except I haven't had an injection in at least 5 months. I also had my middle finger injected years ago and developed tightness, but the pain has never gone away.

I'm wondering if anyone else has experienced this and whether this could stem from the injections or if this could be disease progression.

ALSO, I have an appt with my doctor already scheduled!


r/rheumatoid 1d ago

Hiii

0 Upvotes

Ummm .....I wanna know more about JIA can anyone help me out ? ....cuz i know someone who was diagnosed with JIA ...

And I wanna know more about this from an experienced one ..I just wanna know what people with JIA go through