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 6h ago

Distraught and discouraged

9 Upvotes

I started having symptoms at the very start of 2025. By September after worsening symptoms, constant flares and numerous tests I was diagnosed seronegative RA and put on methotrexate.

That kicked off 3 months of the worst flu/hangover feeling of my life, vomiting every day. On top of my inflammatory symptoms.

Taken off mtx and put on hydroxychloroquine and celecoxib. Doesn’t help too much but at least no more mtx!!

Fast forward to end of May this year and I have the worst flare so far. Can’t work, socialise, can barely go out. Pain and fatigue is overwhelming. Steroid shots barely making a dent. So my rheum refers me to the clinic that can prescribe biologics (at least I cannot complain that the national health service in my country covers these costs, but it comes with bureaucracy).

This morning I finally see the Head of Rheum dept in the main hospital and he tells me in my history he sees no good evidence to justify an RA diagnosis (even seronegative). And certainly not to treat with “potent medications”.

I am just floored. A year and a half of pain, stress, in and out of hospitals and clinics, different medications. I cannot blame any doctor for wanting to feel confident that whatever they treat with will cause more good than harm. But I can’t believe this is happening.

My normal rheumatologist has been assuring me all along that I am practically text book seroneg, I never expected this.

He has referred me to start over with bloods, x-rays, a “whole body bone scan” (i do not know what this means) and ultrasounds. I was so shocked and upset I could hardly think what to ask him.

I just feel like the hopes I had of some relief, some life to live with RA has been completely ripped from me.

Thank you for letting me vent here. Even though my diagnosis might be being overturned??? I don’t know where else to talk about it


r/rheumatoid 2h ago

Decreased breath sounds

3 Upvotes

Hi guys, I’ve been having palpitations recently so I went to my cardiologist- ECG was normal but he’s gonna have me wear a holter monitor soon.

35F, seropositive RA for nine years didn’t start treatment though till my first flare about 5 years ago. On Rinvoq and & HCQ & sometimes prednisone too.

I noticed he wrote in his notes “decreased breath sounds bilaterally” and I have been suffering from intermittent shortness of breath especially on humid days. But my oxygen saturation is normal and I’m not SOB all the time.

I’m all worried now if I have RA related interstitial lung disease, etc. I had to write him about it because I’m like what the heck why would you not tell an RA patient you noted that in your examination?

Anyway just wondering if anyone else with RA has been told they have this- I am hoping it was just me flaring a little, but I did read it could also mean you have lung nodules or interstitial lung disease. Just wondering if you were told this, what did your doctor think about it? Thank you friends


r/rheumatoid 22m ago

What should I be tracking before I make my next appointment?

Upvotes

Hey! I hope this is the right place to ask..

Im seeing a rheum due to costochondritis and other constant joint/muscle pain.

I just finished labs and need to make my follow up appointment, but I wanna make sure im prepared before I go and spend all that money for an underwhelmingly quick appointment, and he misses any other concerns or symptoms that may direct him to the right disorder.

Ive created an excel sheet logging my joint and muscle pain on the daily including the location, type of pain, intensity, factors and notes etc. This is all i have for data..

Is there anything you guys can add that the rheum has asked you to log or track?

I have poor memory so thats why I log and want to have all my symptoms and suspected issues in order beforehand. Like for instance asked when my pain usually occurs and I couldnt give him an answer because I wasnt prepared for it.. i dont wanna miss important screening questions that hinge on getting me the answers I need to feel better.

Thank you in advance!!


r/rheumatoid 1h ago

Eye exam scare/hypertension?

Upvotes

I know that RA can mess with your eyes, and I am also getting older, so I wasn’t worried going into my appointment last week… I just wanted an updated prescription and some new glasses. But the ophthalmologist freaked me out when she suddenly started asking if I have ever had high blood pressure. She got this really intense attitude about it and told me I am probably hypertensive… directed me to go buy a bp monitor, log 3x a day for a week, and then to follow up with my PCP. I told her that I have no history of high blood pressure, and that I have RA, and she just didn’t really respond to that at all. The clinical note mentions A/V crossing changes, sometimes known as “nicking“.

To be on the safe side, I bought a bp monitor and logged a week of perfectly normal blood pressure numbers, and followed up with my doctor. The doctor just confirmed that my bp is still great, and asked if I told the ophthalmologist that I have RA, because apparently systemic inflammation can also cause AV nicking.

I was so freaked out, the way the eye doctor talked to me, I thought I was on the verge of having a stroke.

Has anyone else had experience with this?


r/rheumatoid 2h ago

Enbrel injection site reactions - please tell me it gets better

2 Upvotes

I started Enbrel a few weeks ago. My 1st and 2nd injections were fine, no issues. My 3rd injection was fine initially and then become a red spot about the size of a quarter, but was fading. My 4th injection started getting very red after 1 day, and is now 2 inches wide, swollen and itchy after almost 48 hours. It also made the 3rd site flare up again.

My doctor said next time to take an antihistamine during the day and Benadryl at night the day before the injection, and then again after. And to apply a topical steroid to the site. But if I do all that and it doesn’t improve then we will switch to a new one.
Edit: he also said to alternate injection sites with my thighs, I’ve been alternating sides of my belly so far.

I’m discouraged because Enbrel is actually working and my joints feel better than they have in years. I’m also on methotrexate but have failed Leflunomide and Hyrimoz due to side effects and allergies.

Anyone have any success stories with Enbrel after having bad site reactions?


r/rheumatoid 2h ago

Xeljanz generic issues

2 Upvotes

Has anyone else had effectiveness issues on generic Xeljanz (tofacitinib)? I'm getting wildly different results depending on the manufacturer. The pharmacist says they shouldn't be any different but my body is telling me otherwise!

I've been on Xeljanz for a year and it's the only med that's help my RA. In June my insurance forced a switch to the generic and I got the Ajanta manufacturer. It worked fantastic! Better than xeljanz, less joint pain, almost no stiffness, and significantly more energy. This month I got meds made by Zydus and it feels like I'm not taking anything at all and I'm getting worse by the day. Typing emails and using my mouse is killing me. Hoping my phone is challenging. More swelling and stiffness in the morning and some tendon pain that I haven't had since I started Xeljanz a year ago.

I know these generics are really new but I wanted to put this experience out there and see if anyone else has had these issues!


r/rheumatoid 6h ago

Enbrel results?

3 Upvotes

How long did it take before you knew Enbrel was working? I've had 7 injections now- the first 3, I felt subtle improvements but I haven't noticed anything since. My inflammation looks the same, I have the same joint stiffness, fatigue, etc. as before starting. (I have had severe RA for 20 years with multiple erosions/deformities). I know it won't fix existing damage but I am hoping to prevent further damage and regain some function.


r/rheumatoid 3h ago

Been diagnosed with RA at 28

1 Upvotes

I’ve been recently diagnosed with Rheumatoid Arthritis. It’s been like 6months with the pain. Taking Ayurveda medicines since 3months and it has improved the condition and the blood test levels have also dropped. But I’m still suffering from pain, no idea of the future plan. I feel Constant stress and family drama issues triggered. What say people? Have you experienced the same?


r/rheumatoid 23h ago

Medication denied 😡

31 Upvotes

**please delete if not allowed**

Hi everyone, I am currently on the Enbrel sure-click injection, and have been for about 3 years or so. While on this medication my RA has largely been in remission. I just found out that my new insurance through work has decided that this treatment is “not medically necessary”, an appeal was submitted but they upheld their decision. Whatever I guess, I called my doctor and it’s clear I’ll have to switch medication that is in their formulary.

I am wondering if anybody has tried these medications, and if they found them helpful in their treatment, along with if anybody has switched off of Enbrel to one of these. I do also take Plaquenil alongside the Enbrel. Any insight would be appreciated, I am just so incredibly frustrated and worried that my health is going to decline again.

These are the medications:
Humira
Simlandi
Xeljanz
Hyrimoz


r/rheumatoid 9h ago

struggles with pain

2 Upvotes

hi guys i’m a 20 year old F and im suffering with seronegative arthritis. i have been on plaquenil for 3 months now and sulfasazine for 1 month and haven’t rlly felt much improvement. some days i feel good and others im flaring again. idk if its because of the stuff im eating (like gluten) or simply because i haven’t give the medication enough time yet. i’m not sure what to do. my rheumatologist suggested i try biologics in a months time. i’m nervous


r/rheumatoid 5h ago

Experience with continuous nausea after stopping MTX

1 Upvotes

I'm a 24-year-old female. I was initially diagnosed with juvenile RA in September 2024. I took methotrexate (MTX) for 2-3 months, but the side effects were brutal, so l stopped. I later got a second opinion in another country (where i study), and it turned out my right knee pain was entirely mechanical (a meniscus tear), not autoimmune. For background, all my inflammatory markers were normal. My ANA was slightly elevated (1:320, and once 1:640), but my doctor explained that this isn't a definitive indication of an autoimmune disease and can be found in many healthy (third) women And i don’t have the other signs.

After stopping the MTX, I felt like myself again for about two months. However, afterward, I developed daily nausea that has lasted for months. It fluctuates, but it is especially bad on an empty stomach. And now it back to being worse. I have never had any stomach problems or nausea before this. Has anyone experienced something similar? I don't understand what is happening, and it's severely affecting my life. What am I missing?

Could the MTX be connected to this? Or am i missing something else?


r/rheumatoid 18h ago

32M – Morning finger/wrist stiffness after Army training + strep. Rheumatoid arthritis, post-strep issue, overuse, or something else?

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3 Upvotes

UPDATE: MY ANTI CCP CAME BACK NEGATIVE.

32M – Morning finger/wrist stiffness after Army training + strep. Rheumatoid arthritis, post-strep issue, overuse, or something else? (Labs included)
Hi everyone,
I’m a 32-year-old male looking for some opinions while I continue working with my doctor. I know no one here can diagnose me, but I’d really appreciate hearing from anyone who’s been through something similar.
Timeline:
I was in Army training from November through April. It involved a lot of physical stress: countless push-ups, carrying heavy equipment, repetitive use of my hands and wrists, poor sleep, and spending long periods outside in freezing winter conditions.
I finished training in April.
At the beginning of May, I was diagnosed with strep throat. Looking back, I don’t think it was treated very well, and I’ve wondered whether that could have triggered something.
Around the end of training and after the strep infection, I started developing joint symptoms that haven’t completely gone away.
Symptoms:
Pain and stiffness in both fingers and wrists, especially when I wake up.
My hands feel stiff in the morning, and making a tight fist can be uncomfortable.
The stiffness gradually improves over the morning and is much better for the rest of the day, although it doesn’t completely disappear.
My elbows sometimes ache as well.
My knees have recently started popping. Most of the time they don’t hurt, although I occasionally have mild discomfort after running or playing soccer.
I don’t have swelling, redness, warmth, fever, weight loss, or trouble using my hands.
I can still run, play soccer, lift things, and do my normal daily activities.
Blood work so far:
Rheumatoid factor: 75 IU/mL (elevated)
ANA: Negative
ANA titer: 1:1280
The rest of my blood work has been normal so far.
I’m still waiting on my anti-CCP antibody result.
(I realize the ANA results sound confusing, but that’s exactly what my lab report showed.)
The thing that’s really bothering me is the uncertainty. I’m scared this means I have rheumatoid arthritis or another lifelong autoimmune disease. At the same time, I’ve read that infections like strep, intense physical stress, and repetitive overuse can sometimes cause joint problems too.
Has anyone experienced something similar after military training or a strep infection? Did it end up being rheumatoid arthritis, post-streptococcal arthritis, reactive arthritis, tendon issues, or something else? If your anti-CCP ended up being negative, what was your final diagnosis?
I know nobody can diagnose me over Reddit. I’m just feeling anxious because I’m only 32, and I’m hoping this isn’t something permanent.
Thanks for reading.


r/rheumatoid 1d ago

RA pregnancy stories please? #hopeful

14 Upvotes

I’ve had RA since I was 19 and I’m now 30 and newly married and my husband and I are planning to try and get pregnant in the next year.

I just switched rheumatologist to an amazing one but come to find out my old one really didn’t keep great records and my RA has progressed to the point it’s like bone on bone in my hands and wrists. My new Doctor was surprised I had no idea but my current meds that I’ve been on since 2021 has been a game changer and she said based on the scans I was able to get my hands on, there was no progression since being on this medication.

Unfortunately, there is not enough research to confirm if this medication is pregnancy safe so she is figuring out if I should risk the possibility of progression and take me off it to a pregnancy safe one or if I should just stay on it until the end of my 2nd trimester. I just feel like that would be a huge risk to be on it while pregnant at all if not considered pregnancy safe.

I’m just looking to feel not alone in this I guess right now and like I’m not the only person to experience this or even if someone else went through something similar and can give me some hope.

** Right now I take KevZara 200 mg every two weeks

**I’m in the US specifically NYC. I go to HSS now for rheumatology


r/rheumatoid 1d ago

Spiraling and I need advice

5 Upvotes

I (F39) was diagnosed with seronegative RA two years ago. I also have had lifelong chronic migraines, endometriosis since onset of period, and I was diagnosed with Ehlers-Danlos syndrome at 22.

For RA treatment, I started with MTX, which made me sick (worsened migraines, constant nausea, a yeast infection that didn't go away until I quit MTX 😬) then Leflunomide, which didn't do much by itself, so we eventually added Enbrel (failed due to major injection site reactions) Celebrex, Prednisone and now Rinvoq (in January).

The Celebrex does nothing except give me rebound migraines when it wears off. OTC NSAIDs do the same thing, I try to avoid them. I suspect the Rinvoq is beginning to fail, this 'flare' has lasted two and a half months now. Prednisone at the 5mg daily dose does nothing, and at a high enough dose to be effective, it makes me want to walk out into traffic, I can't stop crying or snapping at people. I had a steroid injection six weeks ago and it might as well have been water for all the good it did. I have to drive hours out of state to get weed and it doesn't really help enough to be worth it.

My hands are fucked. They feel like they belong on someone else's body. My fingers are starting to deform, they're twisting and I've got nodules forming on my knuckles. I've got nerve pain starting in my hands and feet. I've emailed my rheum's office several times since January, reiterating that this treatment isn't cutting it, that it is affecting my livelihood, my mental health, my marriage (my husband is very understanding, I'm the one frustrated about not being able to have sex without pain). I almost exclusively see one of the rheum's nurse pracs, who only seems to care about my labs and not the fact that my whole frigging life is slipping out of my fucked-up fingers. She still hasn't done any imaging except for my back, which was "unremarkable" even though I was having major SI joint pain.

The real problem: I'm a personal trainer and yoga instructor, or at least I'm still trying to be. It's not going well. I exclusively train women with chronic illnesses, so my clients are understanding, but it's getting to the point where I can't show up for them the way I want. I'm down to a handful of loyal long-timers, and I'm not making much money anymore. Strength training was the one thing that made my body feel normal. It helped so much with the EDS symptoms and now I can barely pick up a 5lb dumbbell.

When I was diagnosed with EDS, my rheum at the time told me I would be in a wheelchair by the time I was 40. I'm starting to think she was right. I feel like I'm doing everything by the book but I'm only getting worse. I eat like a 95% Mediterranean diet, I drink lots of water, I comply with my treatment, I try my damndest to exercise but I have to choose between having the energy and recovery time for my own workouts or for working with my clients.

I dragged myself out to see the Odyssey with friends on Saturday, and went paddleboarding for 20 minutes on Sunday and now I can barely move. I'm posted up on the couch, alternating heating pad, ice packs and hand massager, trying not to think about it all, but that's not working so I'm here to ask for advice from the pros.


r/rheumatoid 19h ago

How Much Time to be back to routine?

1 Upvotes

Got detected with RA in Mid March 26. On 20 mg MTX. My symptoms have been better and also the energy levels.

But the recent blood reports show high level of ATL in liver function.

How much time did you guys take to be back to routine after you got detected?

I am taking supplements, following a diet, not eating outside food. Started with physio too. I am just very stressed personally.


r/rheumatoid 1d ago

Enbrel mini cartridge for auto touch auto injector question

3 Upvotes

I did my shot of Enbrel. I have the Enbrel mini cartridge for auto touch auto injector. I went to pull the purple cap off the cartridge like ur supposed to after you put it in the auto injector. When I did, a TINY SPECK of the liquid came out. I still went to inject it since it was an extremely little tiny drop, but Is that normal and okay? I’m sure that tiny little drop isn’t going to change anything. Just that after, now I’m thinking should I have just threw out the whole cartridge and done a new one even though it was a drop? I’m probably over thinking it.


r/rheumatoid 1d ago

What do I do? Is it time to try something else?

2 Upvotes

32/F was diagnosed in January post my kiddo being born. I started on the basic MTX and after minimal impact started Hadlima in April. First three injections was feeling back to myself, after a month of waiting for my RX to be approved I reverted back to previous state when on just MTX. Shot #3 is this week and taking MTX weekly also since my second shot.

Have an appointment in August and debating if I need to advocate for a different med or just stick to my current therapy knowing I’ll never be back to where I was prior to ra symptoms.
My rheumatologist sucks and tried to push Rinvoq when insurance wouldn’t cover Humaira, and only biosimilar. I am sure tied to her kick back with the drug manufacturer but I am concerned to go to the next level of biologic without enough trial of my current meds.
Anyone else had this? Thoughts?


r/rheumatoid 1d ago

what happens after humira?

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1 Upvotes

r/rheumatoid 2d ago

How soon to tell someone you're dating that you have this?

10 Upvotes

With online dating, how early do you tell the other person that you have RA?

Have you had negative experiences with dating and having an autoimmune disease (in terms of how the other person reacts)? Especially for those of you who want kids. Because there's is a genetic component to the disease and a chance that it can be passed down to your children so I'm assuming some might not wanna date us if they want kids.


r/rheumatoid 1d ago

I graduated to infusions

4 Upvotes

So Actemra no longer worked for me after 4 marvelous years I spent the last 6 months in hell before i caved and got on prednisone. Trialing Truxima infusions but im just playing the waiting game now. I have about 6-8 actemra medication unsealed. I hate to throw it away because its thousands of dollars. My clinic wont take it back and neither will pharmacy. Anybody know where I can donate this? in Minnesota. Thanks!


r/rheumatoid 2d ago

Do you all get this too?

Enable HLS to view with audio, or disable this notification

13 Upvotes

Quick back story, been on plaquenil since april after briefly starting it in march(positive ANA IFA speckled and homogenous) and having a major flare that they at first thought was the meds so they were stopped but was just more of the autoimmune. Restarted it in april after I landed in the ER And had follow up with rheum. From looking at my joints and other symptoms, mixed connective tissue disease, seronegative Ra And PSA has been thrown as possibilities. They wanted to see how I did with the plaquenil. Well the plaquenil totally normalized my funky blood work and corrected the inflammation markers and has helped my fatigue soooo much. However my joints & tendons & skin continue to get worse at rapid speed. I’m in so much pain. Have a follow up next week. Last appointment they mentioned possibly
Adding humira. I just feel like a prisoner in my own body but am so glad I have doctors willing to help. Curious if anyone has anything like this? New nodules( or what looks like them) and swollen joints and tissues seem to pop up everyday.


r/rheumatoid 1d ago

Need some advice

2 Upvotes

Hi all,

Anyone here have any advice, hacks to dealing with window blinds wands? Recently moved to a house with horizontal blind and my RA has been making it difficult to operate


r/rheumatoid 1d ago

UCTD

2 Upvotes

Recently DX w UCTD, but rheum highly suspects seronegative RA due to scan findings. My main issues were malaise to the point I was calling in sick to work and just feeling super achey and like I had the flu or covid and kept getting these flares on and off for years. Surprised that it is likely RA . Anyone else w similar journey? I’m female mid 40s.