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.

139 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

Steroid Taper - 40mg to 20g then stop? Has anyone done this?

3 Upvotes

My daughter has been given a steroid taper for eight weeks starting at 40mg, reducing by 2.5 mg until 20mg, then stopping. She has a diagnosis of sero-negative inflammatory arthritis

We collected the prescription a couple of days ago but I didn't notice that the taper was at 2.5mg (last time she had a course it was a taper of 5mg per week finishing at 5mg). I went back to the pharmacist because I thought she hadn't been given enough tablets to finish on 2.5 which was when the pharmacist said she was meant to stop on 20mg. Hope that makes sense!

Has anyone else done this? The universal opinion on here seems to be that you should taper very slowly at the end so I'm a bit worried about it!

Thank you very much.


r/rheumatoid • • 3h ago

Simponi injections

2 Upvotes

So it’s time to do my second Simponi injection.
I started last month after being on Humira for 4.5 years. Never had many side effects with Humira but my first Simponi injection was totally different.
I was sick for 3 days - felt awful and a bit scared.

Anyone else experience bad headaches, increased pain and a lot of nausea with the first few injections? I’m hoping my body gets used to it asap. I struggle with high blood pressure too and last month was awful.
Need some positive thoughts and encouragement.
My RA has been uncontrolled for over 7 months and I need the medication in me and working!

Thanks for the kindness- any support , suggestions to ease my anxiety is welcome!


r/rheumatoid • • 16h ago

Help for co pays on biologics On Medicare

7 Upvotes

So I’ve been on Orencia for almost 4 months. My RA Dr actually had me use samples for first 3.5 months and now Im paying UGGHHHHH
Jesus its $1400 a month for 2 months then Medicare kicks in. Ive tried Bristol Myers but we make too much to get help. anyone making over $65000 is not available for help.
Any ideas are so appreciated


r/rheumatoid • • 1d ago

How dismissed symptoms can push patients to breaking point: Patients with autoimmune diseases have been left feeling suicidal after feeling like their doctor was saying their symptoms were ‘all in their head’. Only 7% agreed with being told that their symptoms were “psychosomatic”.

Thumbnail uea.ac.uk
37 Upvotes

r/rheumatoid • • 18h ago

Feeling in pain every day

2 Upvotes

Hi i know this group is for RA. Anyone taking Sulfasalazine rn? My doctor prescribed that bc my liver number were high but last months i feel too much pain and we are trying to switch to Rinvoq . Somebody taking that. My insurance did npt approved Enbrel so we settled for Rinvoq . I am trying to feel better bc i need to work but everyday is a battle. Thank you for reading


r/rheumatoid • • 1d ago

In the very beginning stages of being diagnosed and Methylprednisolone making the pain worse??

5 Upvotes

Pain started 6 months ago, had an effusion in my right knee where I was unable to walk. Had to have it drained twice.

Was able to get into the rheumatologist. I had lab work done, imagining, and a physical exam where my doctor immediately noticed swelling in all the joints on my right side (toes, ankle, fingers, wrist, elbow.

She put me on a 6 day course of Methylprednisolone before I start Hydroxychloroquine.

I am on day 4 but the pain feels so much worse.
Anyone experience something similar?


r/rheumatoid • • 20h ago

Fatigue tips

1 Upvotes

So i have RA and fibromyalgia and am in a MAJOR flare right now. (Rheumatology has already been called but they said fatigue may or may not be treatable)

I'm in crazy amounts of pain and the FATIGUE both from the disease itself and from being in pain is insane.

Then I have painsomnia so I cant sleep great at night (even with sleeping meds) but then im so fatigued all day long.

I work full time and am barely functional at work. Caffeine doesnt help and I already take B12 and CoQ10 for energy support.

Any and all tips helpful while I wait for the rheum team to decide what the next steps are medication wise, especially knowing the meds might not help this level of fatigue.


r/rheumatoid • • 1d ago

Exhausted of meds

2 Upvotes

I’m currently taking 15mg meloxicam, 400mg HQC, Enbrel injection weekly, and 3000mg sulfasalazine daily. I still feel miserable and I’m just so exhausted of trying to feel better. :(


r/rheumatoid • • 21h ago

[Supplement] [Article] FCGR3A polymorphism and variability in rituximab response in rheumatoid arthritis

0 Upvotes

Can someone please send me the pdf for 10.1016/j.cca.2026.122526

Thanks in advance


r/rheumatoid • • 1d ago

Amgevita experiences - failing biologics?

4 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 • • 22h ago

How did you cope with when you first diagnosed?

1 Upvotes

I am not yet diagnosed.But i think I have RA.I have foot deformities and My mother got recently diagnosed with sero negative RA.

For context,I will be joining my medical residency soon.but before that I will get tested for RA.But I am scared to face the diagnosis.All i can think about is how much of my time consumed by medical training.and then next 3 years also i will have sleepless nights,stressful residency.Is it worth it.What if I form deformities by then,I can't do many things even if I have money.did you ever feel like I should have known this sooner,I would have loved my life before it affects my joints?

Note: English is not my 1st language.


r/rheumatoid • • 1d 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?

36 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 • • 1d ago

Starting Enbrel & want to hear others' experiences

3 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 • • 1d 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 • • 2d ago

RA, Early Menopause, and HRT.

12 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 • • 1d ago

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

3 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 • • 1d 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 • • 1d 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 • • 1d 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 • • 1d 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 • • 2d ago

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

12 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 • • 2d 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 • • 2d 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?????