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.

142 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 • • 1h ago

Amgevita experiences - failing biologics?

• Upvotes

Hi everyone,

I'm looking for some advice and experiences from others who have been on Amgevita (adalimumab), particularly anyone who has switched from Cimzia.

I was diagnosed with rheumatoid arthritis in May 2026 after developing symptoms postpartum. Since my symptoms started, I've never really had a period where my disease has been well controlled. My rheumatology nurse has actually said that rather than experiencing individual flares, my RA is just constantly active and uncontrolled, as I've never really come out of a flare in the first place.

I was on Cimzia for 16 weeks but only had a partial response, so my rheumatologist decided to switch me to Amgevita. I've now had my second injection and am in week 4, but unfortunately I feel worse than I did on Cimzia. My shoulders, wrists, ankles and knees are all flaring, and the pain and fatigue are becoming really difficult to manage. I did feel somewhat better while taking Cimzia, particularly initially after the loading doses, but I'm honestly not sure how much of that improvement was actually down to Cimzia itself. I had two steroid injections during those 16 weeks, so it's difficult to know whether it was the biologic helping or the steroids masking some of the inflammation.

I'm also taking hydroxychloroquine, which I've been on for around five months now, alongside daily etoricoxib, but nothing seems to be getting my disease under control.

For those who have taken Amgevita, how long did it take before you noticed a difference?
I've read that some people feel an improvement almost immediately, while others take weeks or even months. I've also read that symptoms can temporarily worsen when switching biologics because the previous medication is wearing off before the new one has had enough time to work.
Has anyone experienced this? Did you initially feel worse after switching biologics but eventually improve once the new medication kicked in?
I'm desperately hoping Amgevita is going to be the one that works for me.

I'm a mum of two children under two, and this past year has honestly been one of the hardest of my life. There have been days when I've barely been able to move, and the pain is completely all-consuming. Trying to look after two babies while dealing with constant pain, stiffness and exhaustion has been incredibly challenging, both physically and emotionally. The hardest part is feeling like I'm missing out on my babies' first years because I'm either in too much pain or too exhausted to do the things I want to do with them. I just want to be able to enjoy being their mum without constantly thinking about how much pain I'm in.

I know biologics can take time and everyone responds differently, but it's so disheartening when you've already spent months waiting for one treatment to work, only to have to start the waiting process all over again.

I'd really love to hear from anyone who initially struggled on Amgevita but eventually had a good response. How many weeks did it take? And did anyone feel worse before they started feeling better?

I'm just praying something starts working for me soon because living with uncontrolled RA while raising two babies is absolutely exhausting.

Thank you to anyone who takes the time to share their experience.


r/rheumatoid • • 16h ago

Newly diagnosed (F28) – Doctor gave an ultimatum: Have kids NOW or go on Methotrexate + 5 years of birth control. Pill gives me migraines, feeling stuck. Help?

27 Upvotes

Hi everyone,

I was just diagnosed with Rheumatoid Arthritis a few days ago (F28) and I’m feeling completely overwhelmed. My internist told me that I need to start Methotrexate immediately. Because of this, she is insisting that I must go on hormonal birth control and completely freeze any family planning for the next 5 years.

She essentially gave me an ultimatum: either have children right now, or wait 5 years. The thing is, I am *not* ready to have children right now. But I also absolutely hate the idea of having my life rigidly locked down and planned around a medication for the next half-decade.

On top of the timeline issue, I have multiple health constraints that make this plan feel wrong for my body:

_ I am unable to take the contraceptive pill. It causes severe side effects for me, specifically intense migraines and tingling/numbness in my limbs.

_I heavily struggle with digestive issues. I also have a history of fluctuating kidney function. My doctor says my liver is perfectly healthy, so she feels Methotrexate is safe. However, I know Methotrexate is cleared by the kidneys and can cause major stomach toxicity if it backs up, which terrifies me given my sensitive GI tract and history.

My doctor mentioned that the only alternative to skip the strict birth control requirement right now is if I get an MRI, and if it shows absolutely no joint erosions, she *might* agree to just monitor me every 6 months without meds. But I am terrified of leaving my RA untreated and getting joint damage.

For those who were diagnosed in their late 20s:

How did you handle your treatment timeline if you weren't ready for kids yet, but wanted the flexibility to have them in a few years?

Did your doctor offer you pregnancy-safe maintenance medications right from the start that bypass these birth control requirements entirely?

Should I bypass this internist and go straight to a dedicated Rheumatologist for a second opinion?

I feel incredibly stuck and like my autonomy is being taken away. I would love to hear how you handled this. Thank you.


r/rheumatoid • • 3h ago

Urgent advice/perspectives please.

1 Upvotes

First off - I know that for urgent healthcare issues I need to contact my Rheumatology team but it’s too early in the day to contact them and I don’t really know what to do with myself. If I can’t get through to them soon I will go to A&E, just expect to be dismissed as a dramatic woman if I go there. I am looking go hear about whether anyone else has experienced anything like this. I am in the UK.

After some mild stress and a lot of feeling cold yesterday, I’ve spent the night in a lot of pain. I’ve been able to get to sleep and each time I’ve woken in more & more pain and it’s now unbearable.

The best way I can describe the pain is like when you go back to the gym and do ‘leg day’ after not going for ages - that muscle fatigue, residual pain on resting and sharper pain when moving - but in every single muscle. My arms, legs, back, stomach, even my neck and head. It’s especially painful to lift my head and even swallowing is really hurting.

Please please let me know if any of you have experienced the same or similar, what you did, what Rheums said etc.

Thanks!


r/rheumatoid • • 8h ago

Starting Enbrel & want to hear others' experiences

2 Upvotes

Should be getting my first shipment tomorrow or the next day! Feeling hopeful as I tried HCQ with no luck, and my symptoms have been in full force since February this year. A little nervous about it suppressing my immune system as my career is in sales so I'm around tons of people every day.

If you took Enbrel:

•How did you feel after your first dose / the first couple weeks?

•Any tips for the sureclick injection (never given myself shots before)? I read it can sting quite a bit.

•How long before you saw improvement in your symptoms?

•Has it continued to work well for you long term?


r/rheumatoid • • 19h ago

RA, Early Menopause, and HRT.

13 Upvotes

I officially reached menopause in July 2022 at 44. My rheumatologist chalked it up to my aggressive, high activity RA and I kinda back burnered it due to other issues that kept cropping up. (Medications failing, horrible allergic reactions to Lef and Sulfasalazine, a two year mega flare, moving towns, life...)

Now that things are under control and my RA is adequately surpressed, I'm back in the saddle (literally able to ride horses again!) And ready to start addressing the early menopause deal.

Especially since the hot flashes and brain fog seem to be returning after seemingly finishing a year ago.

I'm going to be discussing HRT with my PCP and was wondering if anyone here cares to share their experiences with menopause related care in conjunction with their RA.

My rheum is all for it! She says it can help reduce inflammation, can offer some joint protection, bone protection, and that she sees remission in more post menopausal women on HRT than without. It's not a guarantee, of course, but she feels I would benefit from it greatly and was thrilled I brought it up at the beginning of the month.

So please do share if you have any experiences, good or bad!


r/rheumatoid • • 14h ago

General platelet count

3 Upvotes

Hi y’all

I’ve had a growing platelet count up to 700 now and my rheum said she hasn’t seen anyone with platelets that high from RA alone. I was wondering what are y’all’s platelet counts (before and during treatment) usually around when you get CBCs done? I’m already going to a hematologist as well.

Obviously I know this isn’t like an actual study or research, I am just wondering.


r/rheumatoid • • 13h ago

HELP! I have Ankylosing Spondylitis and PMR and no Biologics have worked!

2 Upvotes

I was diagnosed with AS and Polymyalgia Rheumatica 3 years ago and life has been living hell since. I have been in moderate to severe pain every day for 3 years and have gone thru multiple biologics, nothing takes my pain away. Most of my pain is in my neck, shoulders, hips, low back, forearms and fingers. We know it to be AS because I am showing enthesitis on ultrasound in my fingers and forearms. We also know it to be PMR as I am showing Biceps Tenosynovitis, joint synovitis, chronic tendonopathy and inflammation in the shoulders.

I have been on Kevzara, Humira, Actemra, Rinvoq, Cosentyx, Methotrexate and just started Bimzelx a few weeks ago. I took all the others for at least 3-4 months before stopping per my rheumatologist. We did a trial of just Prednisone and it was the only thing that made a significant difference in the pain level, however I am also a Type 1 diabetic and I cannot take steriods. Just for the trial of several months I consented to steriods and with double and triple the amounts of insulin my blood sugars were still as high as 400s, not accetable, I am very well controlled. I have tried multiple different NSAIDs, muscle relaxants, anti-inflammatories and nothing has touched my pain.

I am up at least 10x during the night because just turning over in bed is excruciatingly painful. I am sleep deprived and in daily pain. I went from a very active person to a couch potato. Just walking my dogs is painful in my hips and low back. I am curious as to which biologic has helped those with AS?


r/rheumatoid • • 10h ago

Rheumatoid and statins

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0 Upvotes

Has anyone with rheumatoid arthritis been put on statins and did they make your pain worse?

Were you able to get off the statins and did you have to taper off or go off slowly and get it cause any issues?


r/rheumatoid • • 14h ago

Can’t take methotrexate because of my liver, but I’m sick again

1 Upvotes

Hi guys. For the past 6 years, I had been getting chronic sinus infection like illness. I said like because they weren’t true sinus infections, but my CRP would go sky high (80 at one point) and I’d have sinus infection like symptoms, but clear CT scans. I do have swollen turbinates though. Anyway, this all went away when I started methotrexate. I take infliximab for my joint pain, which is pretty good.

Around two weeks ago I landed in the ER due to a sharp pain in my upper stomach for several hours, and I had Murphy’s sign. So they thought I had gallbladder issues. The CT showed that my liver was enlarged and I had fatty liver, plus a lesion. My rheumatologist stopped methotrexate and now I’m having an infection again.

I can’t take hydroxychloroquine because I take Ziprasidone to treat my schizoaffective disorder. And my psychiatrist doesn’t want me to change it due to how bad I am unmedicated. And I’ve been on Ziprasidone for several years. When I miss a dose or two, I have a lot of hallucinations and paranoia.

I’m really stressed and not sure what to do. Are there even any other options? It feels like everything affects the liver. I’m getting blood work and scans on Wednesday, so hopefully it’ll have more answers. I’m just really stressed.


r/rheumatoid • • 5h ago

Has anyone tried go off the medicines for sometime and see how your body reacts?

0 Upvotes

I have been undergoing RA treatment for 4 years now.....around 1.5 years back i felt like medication has reduced my immunity and i am constantly feeling sick.

I have stopped my medicines for around 4-6 months and i have observed pain has escalated to different joints and then i have to restart the medicines.

Has anyone tried this kind of thing and has any observations?


r/rheumatoid • • 1d ago

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

9 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 • • 1d 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 • • 1d 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 • • 1d ago

Supliment help

1 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 • • 1d 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 • • 1d 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 • • 1d 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 • • 2d ago

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

25 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 • • 1d ago

Desperate for help as my arm muscles waste away

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2 Upvotes

r/rheumatoid • • 2d ago

Scared of Hydroxychloroquine

12 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 • • 2d ago

How’s your immune system on 20mg MTX?

6 Upvotes

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

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

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

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

Thanks!


r/rheumatoid • • 2d ago

skin issues

0 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 • • 2d ago

Rituximab tolerance

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1 Upvotes