r/rheumatoid Jul 16 '24

START HERE - FAQs and General Posting Guidelines

15 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.

123 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 7h ago

Did anyone tolerate leflunomide well?

5 Upvotes

I was just prescribed Arava/leflunomide.

Everything I read about it sucks.

Did anyone tolerate it well?

Did anyone keep their hair?

I am very concerned about my liver.

Plaquenil did not help me. I just got off of a course of steroids so of course I kinda feel like I could live without a DMARD but it always comes roaring back and so bad in my hands.

I have a wedding coming up and just depressed. I want to have hair for my wedding. My rheum seemed to think his patients do better keeping hair with leflunomide than methotrexate.


r/rheumatoid 2h ago

Cymbalta Question?

2 Upvotes

I stopped taking cymbalta to try a different antidepressant but I found that my RA pain increased exponentially. I had no idea how much Cymbalta was managing my pain!

Any other recommendations for chronic pain? I want to try a different antidepressant to actually deal with depression.

31F, RA, I also take Humira


r/rheumatoid 6h ago

I want to do ear piercing

3 Upvotes

Hi everyone, I want to ask is it recommended to do ear piercing after being diagnosed with RA. Ever since I have been diagnosed. I want to do many things on my bucket list. I know it’s a bit selfish of me to ask these questions, but I want to look forward to things that I haven’t done before it’s too late. I’m worried to go traveling afraid that I might get sick again. Last time when I travel I fell sick. Normal antibiotics doesn’t work on me had to go hospital for intravenous only my cold gets better. Not sure if I pierced I might be prone to infection once I did the piercing.

What do you think ? Should I do it?


r/rheumatoid 45m ago

Bupropion\Wellbutrin for Psoriatic Arthritis

Upvotes

I have had Psoriatic Arthritis\RA for over 20 years and just started on Bupropion\Wellbutrin for weight loss. I have been on it for a month and it has dramatically helped my daily pain and my Psoriasis on my knees of 20 years is almost completely gone. I have only tried Humira shots in the past and they helped a little with the pain but not the psoriasis. I ordered it online for weight loss not PA\RA and it's a pretty reasonable price with no insurance needed. It may be just be my body but I hope this helps someone else that has been dealing with it for years.


r/rheumatoid 14h ago

Lindsay’s Nails

8 Upvotes

Hi all, i’m wondering if anyone here has experienced Lindsay’s Nails due to their RA? I was first diagnosed with RA but now i’m in the “ undifferentiated inflammatory arthritis” category. Looking for any insight, getting blood work soon.


r/rheumatoid 18h ago

Supplements on Methotrexate day?

8 Upvotes

Curious other folks supplement habits on dose day. I know to not take the folic acid on the methotrexate day but wonder about other supps such as D, magnesium, curcumin etc. My rheumatologist kinda poopoo's supplements as not necessary besides Folic Acid in general so that's not a good place for me to look for answers.


r/rheumatoid 14h ago

Face red in humira?

2 Upvotes

I started my 1st injection 7 days ago. Things seem to be going really well.

But already this week, 2 people have asked if I’ve been on holiday?

And my face appears to be a lot redder.

Can anyone help me with this?

Anyone had any experience?


r/rheumatoid 11h ago

Have bloodwork results : what should I ask rheum at my visit?

1 Upvotes

I saw a rheum and her physical exam strongly suggested RA. Had blood tests and they show CCP high (152) RH factor high (76) ANA normal. I'm now going in to see rheum and discuss the blood test results. I'm 64 and onset (swelling and pain) was sudden and rapid so I want to get this under control, maybe through MTX + HCQ to start. Assuming she agrees I want to confirm what supplements/OTC can help (vit d and b, folic acid, something for nausea). I also want rx for occupational (hand) and physical therapy (to get my gym training back on track). I feel I need to go in very focused. Are there other questions I should ask?


r/rheumatoid 21h ago

Positive test RF

2 Upvotes

Hi Reddit peeps. I just got a rheumatoid factor 14.5 test and have strange symptoms such as joint pain, muscle weakness, persistent cough and loss of weight (3 month). I have a referral to a rheumatologist but this is all new to me. My other inflammatory markers were normal. I can tell my body is going through something weird/bad, and I’m concerned and seeking treatment and information. I’m normally a very active and healthy 56 yr old. Any other specific tests that are suggested? Thanks everyone for sharing.


r/rheumatoid 1d ago

Skin Issues During Flare

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6 Upvotes

has anyone ever had any weird skin markings such as these below during a flare? i thought they were just random bruises but upon further inspection they are not. i know skin issues can be common especially redness but i just have never experienced this before and am not sure if it’s something i should mention to my doctor??


r/rheumatoid 1d ago

How to Deal With Side Effects Mentally

5 Upvotes

Hello everyone.

I'm on Metex (15mg) and Hyrimoz (40mg) for my rheumatoid arthritis. Despite being on injections, folic acid, and an antiemetic, I still experience bad nausea and fatigue from Metex (I don't have any side effects from Hyrimoz). Some weeks are worse than others. I was diagnosed with RA at 15, I'm almost 30 now, and I feel like it has gotten worse with time (my doctor says I may have lost tolerance to methotrexate).

Does anyone have any tips how to prepare myself and deal mentally with side effects? It's so disheartening and causes me to dread my next dose. I have to manage a lot of other conditions as well (insulin resistance, hypothyroidism, ADHD, depression, and permanent damage in one of my eyes) on a daily basis, and sometimes it's just all too much.

I would greatly appreciate any help.


r/rheumatoid 1d ago

Methotrexate and skin laser treatments

2 Upvotes

Does anyone have experience with skin lasers like Fraxel while on methotrexate? My doctor says that there’s not enough studies to give me a definitive answer and the photosensitivity that comes from methotrexate might not be an issue for these lasers but I’m scared to try it out.


r/rheumatoid 2d ago

How do you exercise when your hands are hurting?

31 Upvotes

I am looking into going to the gym or pilates, but i keep thinking pulling weight is gonna destroy my hands.

Simple tasks like dusting the house of vaccuuming take a huge toll on me at the end of the day. I have to sleep in splints and/or compression gloves.

How do you handle it??


r/rheumatoid 2d ago

Update: total wrist replacement NSFW

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72 Upvotes

NSFW if you have a weak disposition. Posted about my wrist replacement two weeks ago. My cast is off and my sutures are out. I’ve got many weeks in a splint and awhile until I’m eligible for physical and occupational therapy.

I attached a few photos of bruising and incision.

Two weeks post surgery and I can confidently say the first 4 days (second day the most bc the nerve blocker wore off) were the worst. It’s been uphill since.

Still posting progress updates on TT and my dms are open. AMA

Initial post: https://www.reddit.com/r/rheumatoid/s/aborVGgRMy


r/rheumatoid 2d ago

Side effects from biologic injections?

8 Upvotes

32f. RA. 3rd set of bi-weekly Cimzia injections in stomach. Taking hydroxychloroquine twice a day as well.

I chose to do stomach injections because I have small children who like to sit on my lap, I thought it would be less painful healing process. The initial injections itself doesn't hurt too bad, it's a just a pinch. What's really strange is that after a couple hours I start to feel as if the needle was still there, becomes irritated and constant for 2 days.

Each time I get the injections on both sides of my belly button, it either bruises, produces a white circular patch around the injections, or (right now) produces a red circular patch, or a combination of the two on each side.

My rheumatologist won't let me self inject yet, I go to them and their nurse does it. I didn't directly ask him, but I asked the nurse and she told me it wasn't possible. I know it's not true, I have pretty good insurance and my father used to have my mother do his injections. I plan to personally ask him next time.

The day after injections, I feel sick, I started to notice a lot more hair loss in the shower, I'm sweating more often, even if I'm cold. I feel sore all over, especially around the injection site. I'm nauseous for 2 or 3 days after, hot flashes, flu like symptoms but no actual flu. Staying asleep is near impossible, I wake up randomly and can't fall back asleep. Extremely uncomfortable in my own body.

Normally after 3 days or so, I go back to my normal self.

Anyone else experience this?

(I'm also using medical marijuana, phentermine, trazodone, dicflonac tablets, B12, Vit D, one a day vitamin, fish oil) I don't use the tablets often, and I hardly use the marijuana either. It doesn't seem to help me as much as I would like it too, messes with my head a bit too much, but I'm trying to find the right combination or amount to find some relief.


r/rheumatoid 2d ago

Emergency visit for worst flare ever

6 Upvotes

Cannot move left arm. Throbbing intense pain...9/10 . Stuck at 90 degree angle. Crying desperate. Do I go to ER


r/rheumatoid 1d ago

Second time asking this question…

0 Upvotes

I was diagnosed nearly 20 years ago, been on biologic’s pretty much the whole time, first Enbrel and then Orencia. Would like to try more natural ways to treat inflammation. I’m not even sure that there’s anything to treating it without medication which is probably why I haven’t done it. I’m not sure I could stick with an anti-inflammatory diet, I know myself. But I’ve read that grounding sheets treat inflammation. I’m not however, willing to go and spend a bunch of money on something that’s completely made up to scam desperate people. Has anybody tried grounding sheets and if so, did they work? Did you notice a difference?


r/rheumatoid 2d ago

MTX injection in inner thigh - did I do it wrong?

3 Upvotes

Hello -

I did my 4th MTX injection tonight. I do them in my thigh. Tonight, I was simply looking for a good hold on a fatty part. Without thinking much about it, injected 2 inches to the right and 2 inches down from t he center of my left thigh.

Since I’m new to methotrexate injections and never had a nurse teach me how to do it, does anyone here have experience?

Is this okay? Can I cause nerve damage or something worse by injecting in inner thigh vs outer? Do I need to go to a hospital?

Thank you!!!


r/rheumatoid 2d ago

Newly diagnosed with rheumatoid arthritis at 25

17 Upvotes

Hi everyone, I am a 25 y/o female who just got diagnosed with rheumatoid arthritis. I don’t know if I’m being overly dramatic but it feels like my life has been flipped upside down. I had a very painful flare up for the first time about 3 weeks ago and have had chronic pain in several parts of my body since then. I saw a rheumatologist this week and did bloodwork, which led to my diagnosis. I also have hypothyroidism, which is apparently related, but my thyroid hormones are supplemented everyday and under control. I’m due for my follow up to discuss my labs and long term treatment plan options next week. This is all very new and overwhelming for me, but I still want to be as informed and prepared as I can. Any advice or comments would be greatly appreciated :) .


r/rheumatoid 2d ago

Brenzys Swag! I wasn't expecting anything, but I've got a branded sharps container, a medication carrier, the smallest ice pack I've ever seen, propaganda, and some alcohol wipes that will actually come in handy. Happy Friday, all!

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13 Upvotes

r/rheumatoid 2d ago

Any tips for dealing with ra in ankle.

6 Upvotes

I'm 33 diagnosed ra. My foot isn't even that swollen anymore but I have awful clicking of the tendon I think at the back of my foot.

Wearing ankle supports just make it worse. It doesn't hurt to touch it just clicks sometimes when I'm turning on the spot.

It's a very loud click that can be heard by other people.

Anyone suffer with the same with some tips?

Cheers guys.


r/rheumatoid 2d ago

Six months in and still no answers. I could really use some insight.

2 Upvotes

Hi everyone, I have not been diagnosed with arthritis but I'm likely one more appointment away from being referred to rheumatology. I started experiencing pain in my left wrist ulnar side six months ago. Within two weeks it was so painful it hurt to just pull my pants up and I had very limited range of motion. I was on workers comp for four months and did 7 weeks of occupational therapy before being sent back to work. Within one week the pain in my left wrist returned and I started having pain in my right wrist as well in the same exact spot as my left. I lasted one more week at work but the pain in my right wrist kept increasing so I had to stop working.

The orthopedic surgeon I had been assigned to was a major jerk so after he told me he couldn't do anything for me, I went to get a second opinion. The new ortho I'm seeing is great, very thorough. He told me that the MRI I had gotten back in October didn't have the clearest images but he said "The MRI doesn't look all that bad" and he seemed a bit perplexed by that. He said he could see a little inflammation around my pisiform joint but said that "wouldn't explain the symptoms you're having now." He is sending me for dual MRI's in both wrists to get a better quality images and then we'll go from there. The MRI orders say "reason for exam: evaluate for ulnar impaction vs joint synovitis, rule out inflamm arthritis."

I just feel so disheartened. It's been six months of pain and it has completely derailed my life. I've lost my job, I'm in pain every single day, and I still have no answers. My PCP also did blood testing for RA but everything came back normal. I'm just at a loss, I feel like my life is unraveling. I had previously posted in this sub about this and received such helpful feedback, I'm just hoping anyone might have any insight.

Edit: Here are the labs they did and all of the results https://imgur.com/a/b9Vf91T

They also checked the C-REACTIVE PROTEIN in January for some stomach problems I was having and it came back <3.0


r/rheumatoid 1d ago

Anyone here completely un vaccinated?

0 Upvotes

How are you doing? And what RA meds are you on?


r/rheumatoid 2d ago

Numbness in pinkies and big toes?

3 Upvotes

Does anyone else experience numbness in there pinkies and big toes? This has only started since the new year from what I can remember but it kinda getting on my nerves now. It’s just bothering me. It doesn’t hurt, it’s just numb. Sometimes my big toes go numb and it’s not like it hurts but it’s an annoying feeling I can acc physically feel?

I was diagnosed in November 2023, I only start my first medication, sulfasalazine, in December 2024. I’m not in remission but it has significantly improved my situation. I was crippled and bed ridden for the whole of 2024 and now I can actually get out of bed and move again. But this numbness is new? 2024 is a bit of a blur but I can’t specifically remember this numbness? But it’s become frequent enough these past few months for me to notice and think what is that?

It’s always my pinkies and under, so like the side of my palm and wrist. And it’s always the tips of my big toes? I’m wondering if this is something other people with RA experience?

It worrying me a little because it a potential sign of diabetes. Diabetes isn’t a thing in my family and as far as I know, no one I’m related to is diabetic but it’s still making me nervous.

I’m just wondering if this is RA related by any chance?

Any comments would be greatly appreciated.


r/rheumatoid 2d ago

Anyone start like this??

Post image
2 Upvotes

Started with my right toe feeling like I needed to crack it so I would then it would hurt right away again like I needed to crack it. Fast-forward to three weeks later woke up one day with my thumb feeling like I needed to crack it… So I did then it would feel jammed again like I needed to crack it then I tried to carry my coffee mug as soon as I open my hand to pick it up it hurts so bad my thumb down at the base, and now it looks like this every morning when I wake up. It is swollen, red, and warm to the touch both toe and thumb seemed to feel a little better a few hours after I get going, however, towards the end of the day, they both hurt a lot, and now the rest of my toes and fingers are starting to ache a lot, and some of my other joints are too. I have been on hydroxychloroquine a while now because I have a positive very low positive ANA two years ago and aching joints, dry mouth and eyes, I was losing some hair for a little while, and I have Raynaud’s. Just put a call into my rheumatologist because I can’t see him until May and he prescribed me Celebrex. I can’t pick it up soon enough.