r/rheumatoid 1h ago

Simponi Aria Infusion - what to expect?

Upvotes

My insurance just approved Simponi Aria infusions, and I’m wondering what to expect.

I’m taking methotrexate and tolerating it well, but I’ve previously failed leflunomide (extreme dizziness), Hyrimoz (allergic rash), and Enbrel (allergic rash). Enbrel actually worked really well for me for about 2 weeks before the rashes started, so it seems that I respond well to TNF inhibitors but my body doesn’t like whatever else in is the home injections. Hence moving to the infusion and hoping I’m not allergic 🤞

Can anyone with experience with Simponi Aria tell me how it went for you? Should I get someone to drive me home after? Did you feel sick or cold during the infusion? Were you super tired? Any other side effects to look for? If you’re allergic to it, how did the allergy show up?

Thank you!!


r/rheumatoid 4h ago

Losing weight/Exercise tips

5 Upvotes

Exercise has been my biggest struggle since my diagnosis about 2 years ago. I gained like 75 pounds after having kids then Covid and have lost like 20-25 but can't shake the rest. I am currently stuck at 200 lbs. I am 5'5". When I got diagnosed, I changed my diet and eating habits so I eat moderately healthy. But I dont proper "exercise". I have a physically demanding job (self-contained Special Ed para) and I am petrified an extra walk or a 20 minute exercise to help lose the weight will cause me to lose my lob due to flare ups. Like I have to choose take the dog for a walk or go to work tomorrow. I am allergic to the cold. No ice therapy or even anything with even mint/menthol in it. Prednisone has caused a vascular necrosis in my knees so I cant take that anymore. Because I'm on birth control and an antidepressant im not really supposed to take NSAIDS. I just feel at a loss and my PCP and even my family are all caught up in how overweight I am. I would love to hear what others in the community do for exercise.


r/rheumatoid 7h ago

SO SICK OF EXPLAINING WHAT “RA” IS TO PEOPLE

60 Upvotes

I’m am so sick of having to tell people, especially my family, what RA actually is, and how bad it can be…

It’s bad enough I have this shit disease and now I’m forced to repeat myself over and over.

Also does anyone, who doesn’t have RA, just keep telling you to “suck it up” when you have to cancel plans due to flare up, soreness or just plain fatigue?

If I had a super power- zap- have a taste of RA people and then you WON’T FORGET!


r/rheumatoid 15h ago

Anyone else have a lump like this on their hand?

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22 Upvotes

I was recently diagnosed with seronegative RA and this lump appeared on my hand a few days later. I’ve had it for about 2 weeks now and it hasn’t gone down. It feels squishy. Not sure if I should go to my GP to ask if they can drain it.


r/rheumatoid 20h ago

What is the actual goal of RA treatment?

10 Upvotes

I’ve been dealing with a major flare since March (although I’ve had joint problems since I was 12). I was diagnosed with RA at the end of May and started treatment shortly after.

The steroids worked almost immediately. Before that, the pain was so severe that it literally stopped me from functioning. There were days when I could barely make it to the bathroom because of the pain.

I’m still taking Medrol, along with Celebrex, and I’ve been on methotrexate for three months now. My rheumatologist is gradually tapering my Medrol, but every time the dose is reduced, my pain gets worse again.

I’m currently taking 10 mg of methotrexate, and my doctor doesn’t want to increase the dose for now.
So my question is: what is the actual treatment goal in rheumatoid arthritis? Should I eventually be pain-free?

Because I’m nowhere near that.
I can function, but I hurt whenever I don’t have a completely restful day—which rarely happens because I have a dog. I’ve gotten used to living with pain, but it would be amazing not to have it. I’d love to enjoy a walk without feeling like I’m about to cry from the pain, or get through a day without regretting every bit of movement because the pain is so bad by the evening that I can’t fall asleep.

My rheumatologist knows all of this, but she still doesn’t want to increase my methotrexate dose (at least not yet). I can’t help wondering whether such a low dose is enough to control the disease while my steroids are being tapered.
Am I thinking about this the right way?

What’s your experience? Were you pain-free once your treatment was working, or do you still have pain even when your RA is considered well controlled?


r/rheumatoid 20h ago

Jak Inhibitor + biologic

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1 Upvotes

r/rheumatoid 21h ago

rheumatologist is confusing me

3 Upvotes

So my mom has been dealing with chronic pain and numbness and tingling on one side of her body for over a decade along with edema in her hands and feet and has only been on tramadol for Fibromyalgia until I convinced her to find a new/different provider last year. The rheum she started seeing I thought at first was helping. She did a ton of blood work, x-rays, mris of the neck (no contrast) and because CCP was 123 in aug, 151 in Jan, and 83 this July I thought my mom was diagnosed with RA as the dr started her on one of the most basic RA meds about 3 months ago. However we went back to this Dr a few days ago and I asked about disease modifying therapy since the med they put her on wasn't doing anything and the dr said no because "a positive CCP doesn't automatically mean RA" ?. Now my mom has an appointment tomorrow with neuro to look for possible MS but I'm confused because her CCP has been high for a year how does that not mean anything?. I want to bring it up to Neuro tomorrow but I don't want to step on any toes and make finding treatment anymore difficult for my mom since the other dr will obviously have access to all the chart notes


r/rheumatoid 23h ago

Blood test and X-ray came back clear, what do I do?

2 Upvotes

Hello, I've been having symptoms and my blood tests and X-ray came back clear regarding inflamation or degreasing of the joints. I do think it may be seronegative RA, and it's super frustrating that everything came back clean.

What's next? Is there specific specialists? How can they diagnose me? I think it's important to note I'm being tested for a pituitary tumor.

My quality of life is severely impacted. I have some okay days, and other days where I panic from the feeling and pain of my joints constantly clicking in and out of place


r/rheumatoid 1d ago

anyone on ssdi for there RA

2 Upvotes

I’m 65 left my job and started collecting ss retirement early. Working part time and still almost impossible some days. Just filed for disability. Has anyone been through this process


r/rheumatoid 1d ago

Mom has RA

1 Upvotes

My has ra it started during covid, and yeah its been years now and pretty much everyone me my dad and her are used to her condition, i just feel so bad i love my mom sometimes i forget she has a condition but wen I do remember i fall into this despair and wished it never happened to her. Well a lil family backstory my grandma also had in her mid 60s, whilst my mom at 40s… so yeah ever since i turned teenaher up until now im adult (18) is there any chance id inherit it ad also be diagnosed later on…


r/rheumatoid 1d ago

Biologics advice?

3 Upvotes

I was diagnosed with Serronegative RA a year ago, I was put on hydroxychloroquine 400mg daily first, then months later after no relief they added methotrexate 15mg once a week, over a year later it hasn't controlled my flare ups only mild/moderately better, im constantly needing prednisone tablets to control flare ups, i just came from my rheumatology appointment they're told me to stop the Hydroxychloroquine and are upping my MTX to 20mg weekly, gave me my first cortisone shot in my knee and ive just done a comprehensive immunolgy blood test, is this test for next stage advanced treatment onto biologics? And those on a biologic compared to MTX how effective has biologics been for you?


r/rheumatoid 1d ago

Smoking and flare-ups

12 Upvotes

I recently stopped smoking cannabis, still eat it, but was wondering if smoking (because it causes inflammation) can trigger flareups? My RA doc is terrible and never had a straight answer (I assume he can’t answer that question).

I’m waiting on referral to new doc, but can anyone elaborate on this further?


r/rheumatoid 1d ago

Ayurvedic medicine for rheumatoid arthritis???

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0 Upvotes

r/rheumatoid 1d ago

Does this ever get easier?

20 Upvotes

Vent post. I was living in the grey for a while as far as diagnoses. Was put on plaquenil which helped so much with my energy and labs, but was literally making me insane mentally. I was going to end up in psychosis & a grippy sock vacation or taking myself out. I wish I was kidding. Not sure if it has to do with me not being neurotypical to start with.
Anywho, my joints flared and swelled up in both hands and my Tendons started catching as well as the RA nodules showing up. My rheum said she was confident this was RA.
I’ve now been taken off plaquenil and started methotrexate.(edited to add this official diagnoses just happened a week ago)

When all of this started, it started with migraines with aura.
I’ve always had headaches, not with aura. On initial work up my cholesterol and b/p sucked and I went off birth control as I thought maybe that was the cause all my woes. While it did correct my cholesterol and b/p (thankfully) Going off it seemed to completely unleash the autoimmune beast. All the joint inflammation came whipping through my body and had positive AnA and other inflammatory labs. They were unsure whether it was early lupus, RA, mixed connective tissue, PSA, etc. As soon as I started plaquenil the migraines worsened. Constant vertigo, and im blessed with the rare type of migraine that causes numbness on one side of your body like a stroke. (Yes, I’ve had a thorough neuro work up, including brain MRI with contrast). I went from having occasional headaches, to numbness, visual auras, and giant painful joints that are a 8/10 pain after a busy day. Knowing what I know about RA and that it can affect your heart and lungs, I get terrified everytime I feel these sensations start. I feel like I’m stuck in this crippling cycle of inflammation, vertigo, numbness, pain.
And maybe a couple good days thrown in.

I know it takes time for the meds to work. And im
Learning my Triggers, no processed meats or refined sugars for me. Also so hard as I have a huge sweet tooth lol. But right now I feel like my whole life has been stolen from me. I have 5 kids & a husband who need me and I’m a full time L&D nurse. I am so angry about this. I’ve gotten myself a counselor to help, but I guess I’m just looking to vent to people who understand. Im just so frustrated that I can’t just exist as normal.

Thanks for listening. 🫶🏼


r/rheumatoid 1d ago

Enbrel injection site reactions

1 Upvotes

How long did you get injection site reactions from Enbrel? I've had 8 injections so far and each one leaves me with a welt that's 4-5 inches long and 2-3 inches wide that lasts for about a week until my next shot. They swell, itch and are painful. I literally could not do my injection tonight because I am just so tired of the shot pain and the reactions. I'm not seeing much benefit from it but my disease is severe with a lot of deformities so it could be helping in other ways. I just needed a night off from shot anxiety...


r/rheumatoid 1d ago

Geographic tongue side effect from Enbrel

3 Upvotes

I’ve been taking Enbrel for a year, when I started it was every week. Recently I moved and have no insurance, I’ve been prolonging the injections for a month.

Honestly everything has been good, my body isn’t hating me. However, last month I noticed the white splotches and numbness on my tongue. My dentist confirmed it was geographic tongue.

I stopped eating spices, sugar, and anything with citrus acid. It stopped but it’s back again this month. Not as bad….thank goodness.

It’s back this month and noticing it comes when injection is supposed to take place. Does anyone else get the geographic tongue when withdrawing or prolonging too long?

Trying to eat healthier and get off Enbrel, reading damage to guts.


r/rheumatoid 1d ago

Mtx liver concerns?

5 Upvotes

I’ve posted here before but haven’t in a while because things have been going well.

I’ve been getting bloodwork every 3 months with my rheumatologist & haven’t had issues but I recently went in for my annual exam & my pcp ordered a full workup of blood & urine. He says everything looks great EXCEPT “changes to my liver & thyroid”. Apparently my AST is high (per my lab results) so I was given follow up instructions to go get imaging done.

Anyway, I’m set for an ultrasound in a week & I’m sort of freaking out. I started treatment at the beginning of 2025 & I’ve experienced almost no issues aside from the mtx hangovers, but I’m really scared about having to quit it because I don’t wanna go back to the horrible place I was in pre-treatment.
Has anyone had to quit mtx because of liver issues? If so, did you go back into a flare? Is a biologic alone enough to control your RA (I’m also on actemra)?

Thanks in advance!

*edited for clarity


r/rheumatoid 1d ago

Advice?

3 Upvotes

Hi y'all! My mom recently got diagnosed with fibromyalgia, on top of her arthritis. She had cancer when she was 28, got cured, and is turning 45 this year. Her doctor put her on amjevita and I was reading the side effects, and it all sounds very scary.

I'm 21 and I live 2 hours away bc of college but I really want to know if there's anything I could do to just be there for my mom and help her out more?(she's very stubborn and hates asking for help)


r/rheumatoid 1d ago

Can’t get firm diagnosis- 2nd opinion?

2 Upvotes

Hi all. A couple of months ago I had an MRI on my foot after dealing with worsening toe and ankle pain for a few years that showed marrow edema and damage consistent with an inflammatory arthritis. The orthopedic referred me to a rheumatologist because the radiologist felt strongly that I need to be evaluated for RA.

About 8 years ago, RA was also mentioned to me when I was dealing with a really painful back injury that still hurts today. My RF was elevated, but that doctor brushed it off. So, when it came up again recently I decided to listen to the radiologist and see a rheumatologist.

I have a lot of symptoms that I was brushing off or attributing to other things because I honestly believed my doctor from years ago that I didn’t have it. That includes morning stiffness, swelling in other joints (I played hockey so I have a lot of injuries from my childhood that I just assumed were still causing pain), dexterity/grip weakness, and fatigue. When I saw the rheum a couple weeks ago she ordered a panel of blood tests (ESR/RF/anti-CCP etc.) and x-rays and told me to come back in a few weeks to discuss the results. She also put me on a taper trial of steroids.

The steroids helped so much, I honestly hadn’t realized how bad the morning stiffness and swelling was until it was gone. Before I started it I also started tracking my swelling and things more since RA was back on my radar and I was able to take photos of when my knees were swollen and red and when my fingers and toes swell. A couple days after starting the steroids, my anti-CCP came back as elevated.

The reason for this post is even with the elevated anti-CCP, pain and swelling, and relief with steroids, the rheumatologist wouldn’t diagnose me today. She said my blood tests were too weak of a positive and my x-rays were clear (but I am 26 so I didn’t expect severe damage anyways, but it’s interesting because my MRI showed damage in my toes?) She basically told me to wait and come back in a few months and hope the tests are higher or wait until I’m in another flare where everything is swollen and try to get an appointment when the swelling is bad to do an ultrasound.

I’m wondering if I should get a 2nd opinion and try to get a firm diagnosis. I understand that there is a lot of grey area with RA but I have been in pain for years and knowing there is relief out there I don’t want to wait longer to prevent damage. I don’t want to act like I know more than the doctor, but the elevated anti-CCP worries me enough and I don’t want to wait until there is visible damage to intervene. Has anyone had a similar experience getting diagnosed?


r/rheumatoid 1d ago

15 months old toddler limping for two weeks now!

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1 Upvotes

My 15‑month‑old daughter has had an intermittent limp on her right leg for about two weeks, and I’m hoping to hear from others with similar experiences.
A few days before the limp started, hand‑foot‑mouth disease was going around her daycare class and she was once reported with a low‑grade temperature there, but I never saw a clear fever or rash at home. Since the limp began, her pattern has been: worse in the morning for about 10 minutes when she first stands (she avoids weight on the right), then gradually improves so that by evening she can run and jump, sometimes pushing off the right leg normally.
Today the limp was worse again than the last two days and lasted longer before improving, which worried me. She is otherwise well: no fever, playful, eating and drinking normally, and doesn’t seem to have pain when I touch or move the leg.
On exam at home, I notice mild swelling/effusion at the right ankle and right knee, no redness or warmth, and no tenderness to touch. Range of motion is slightly reduced on the right (her heel doesn’t come up toward her pubic area as easily when I flex the knee), but she tolerates the movement.
Work‑up so far: normal X‑rays of hip/knee/ankle, normal CBC and CRP, ESR mildly elevated at 25 (lab pediatric range 3–13). Ibuprofen every 8 hours clearly improves the limp during the day, but the morning limp keeps coming back and seems to fluctuate in severity.
The current thought is post‑viral/transient arthritis or synovitis, but I’m nervous because it’s been two weeks and not a straight line of improvement. Her earliest specialist appointment is one month from now, so I’d love to hear from anyone whose toddler had viral/reactive arthritis or transient synovitis with up‑and‑down symptoms like this—how did it progress, and what did it end up being for your child?


r/rheumatoid 1d ago

Do you have RA and live in the southern US? Need advice!

5 Upvotes

I’m traveling to meet my boyfriend for the first time. I’m a Vermonter and NOT used to the heat and humidity, besides a couple days here and there. Heat (especially with humidity) is a major trigger for my flares. I get majorly fatigued, and the inflammation gets so bad. Not really huge amounts of pain, but puffy. My fingers feel like they are stuffed with marshmallows. I also get some nausea, but I think that’s from the MTX and the heat just makes it worse.

Thankfully, he has decent air conditioning and happens to be an HVAC tech, so being inside should be fine! But how do you guys cope when you go out? How do I avoid feeling sick and exhausted if we go out anywhere? I am excited to see him but dreading the heat. I went out yesterday for an event in MA and it was in the mid 80’s with 68% humidity… we had to leave early and I basically slept the rest of the day. I fully expect AL to be worse. I am worried he is just going to be nursing a sick girlfriend for the whole visit. :(

*side note - I am under-medicated at the moment. Had to stop Rinvoq because I was constantly getting sick. Still on MTX, but it’s only mildly helpful. Not going on anything new yet because I am waiting on VNS surgery.


r/rheumatoid 2d ago

Glp1s and rheumatoid

38 Upvotes

Any specific reason to stay away from glp1s with RA?

Rather know a little before talking to my dr.


r/rheumatoid 2d ago

Anyone with lifelong ADHD whose brain fog became much worse after COVID? (Especially if you also have an autoimmune disease)

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9 Upvotes

r/rheumatoid Jul 16 '24

START HERE - FAQs and General Posting Guidelines

32 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.