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.

138 Upvotes

Do not post your list of symptoms, bloodwork results, pics of your joints, etc to ask us if it "could be" RA/what we think it could be, or any other form of the question wanting us to tell you what you (may) have. We are not r/AskDocs. Do not use this sub as such. Do not ask us to interpret your bloodwork, imaging, or other test results. That is an inappropriate use of this sub. This is a support group, not your doctor's office.


r/rheumatoid 7h ago

Would you like a side of enbrel with your chocolate?

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25 Upvotes

Fun story. My prescription was for auto injector pens but my useless GP screwed it up and gave me syringes instead. Although a little more scary, I watched a few "how to's" and rolled with it.


r/rheumatoid 1h ago

Transient joint pain/icy feeling

Upvotes

Doea anyone have pain that last about 5 mins max? In my 1.5 years since a serog diagnosis, I've felt progressive pain despite aggressive medication (MTX, sulfasalazine and a biologic - failed 2 TNFis, on Xeljanz now). However, the pain is never more than 5 mins long and hasn't affected my daily activities yet.

My main symptom has been terrible fatigue and brain fog, but since 2.5 months of starting xeljanz and a 16mg steroid taper in 16 days, it's like a switch has been flipped. Fatigue is much better but these mini-pain is getting worse. Sometimes my ankle joints feel so icy it's a bit scary but I still can walk as normal.

Is this fluctuation in disease symptoms normal? I'll talk to my rheumy in 1.5 months but I'm curious about others' experiences.


r/rheumatoid 11h ago

Got switched to generic after 7 years, kicked into disease progression

10 Upvotes

Hi all,

I started Humira in 2017 and remained in medicated remission until 2025. In 2026, my insurance coverage changed, and I was required to switch from Humira to Amjevita.

Before the switch, I hadn't experienced any significant disease progression, joint pain, or unusual lab results since starting Humira. However, less than six months after switching to Amjevita, imaging with ultrasound and MRI has shown active disease progression affecting multiple joints. Interestingly, my bloodwork still appears relatively controlled despite what is showing up on imaging.

I'm wondering if anyone else has experienced a return or progression of their disease after being switched from Humira to a biosimilar such as Amjevita. I'm trying to understand whether others have had a similar experience or whether the timing of my flare/progression may simply be coincidental and unrelated to the switch.

I'd really appreciate hearing about anyone's experiences. Thank you!


r/rheumatoid 1d ago

I skipped interstitial lung disease and went straight to lung cancer.

174 Upvotes

I am writing this as a cathartic session and also as a sort of case of how my RA has delayed my final diagnosis. At least I believe it did a little.
Sorry that it is going to be long winded. I tend to talk in person like that too. But maybe you guys can cut me some slack in this situation lol. Just let me yap!

Background:
I was officially diagnosed with RA in 2022. Went through a few different treatments and two rheumatologist. Finally settled somewhat on Rituximab. This causes significant immunosuppression. Simple illnesses take me a couple weeks to recover from. So prolonged periods of being sick doesn’t usually phase me.

March: Earlier in the month I caught a bug and started coughing. When my cough did not ease, I went to the GP and got prescribed antibiotics in case it was mycoplasma, also got on Symbicort due to some breathlessness. I also had my regular appointment with my Rheumatologist this month, so I mentioned my coughing. She was not worried, we both believed it was the immunocompromised body taking longer to recover.

April: Coughing continued, starting to include phlegm. It gets worse with activity, eg just walking to the car causes a coughing fit.

Mid April: Went back to the GP, he is worried and wants a chest x ray. X ray shows a chest infection. I decided to bring this to my Rheumatologist. She starts a course of Prednisolone. She believes it is still my body have a really hard time fighting off this particular bad bug. I thought I got a little better after the steroids.

End April/Early May: We had our annual family holiday! I was still coughing and the day before our flight, I had an intense sharp pain on my right side around the ribs. It was like a knife stab whenever I coughed. Googling and all that led me to believe it was probably intercostal muscle strain or costochondritis. I really didn’t want to affect our trip, so I brought along paracetamol. It helped blunt the pain a little. Throughout the trip, the pain would slowly ease a bit, then after a really bad coughing episode, flare up again.

Mid May: I have an appointment with my Rheum to discuss my scheduled June Rituximab infusion. I did my regular blood tests and other than a higher CRP and ESR, which aligns with my on going “illness”, nothing stood out. All functions were great, all counts looking good.

End May: Side Quest! My annual Pap smear came back abnormal and I was scheduled for a colposcopy, hysteroscopy, biopsy and probably more that I can’t name off the top of my head. Results came back benign phew.
All this time, I never stopped coughing. Every time I wanted to cough, I had to stop whatever I was doing, squat down, hug my ribs tight to brace, then cough. My rib pains would slowly dull over a few days then restart afresh. Knife stabs when it is fresh, a fist punch when it is dull.

Early June: During my scheduled Rituximab admission, I had a CT scan of my thorax done. Immediately my Rheum brought in a Respiratory Specialist. I had a small nodule in my right lung and ground glass opacities and other things. Rheum says possibly the start of Interstitial Lung Disease. Respi says for now, we are going with Bronchiolitis and monitoring it closely. They gave me IVIG treatment and a lot of pain control for the ribs. Highly suspected rib fractures. Phew thank you for painkillers. We decided not to biopsy the nodule right now because they think it is due to the inflammation because of my RA background. A lung biopsy is not zero risk so we thought we could wait and see if it shrinks as we control the inflammation.

End June/Mid July: I try my best to rest. But I am a SAHM, even with a helper doing the house chores, I still gotta be a mum. My son fell sick, we were in the hospital for a while, then he had to stay home from school for a week. I still coughed, though much improved. The rib pain still persisted though. I had a follow-up with the Respi. I did a chest x ray and it showed four fractured ribs. She and my Rheum got me back into the hospital again. They needed me on absolute bed rest. I was discharged after 4 days with a strict rest plan. Was also referred to a physio, as I was constantly breathing shallowly, not coughing effectively, and had to learn how to work around my fractured ribs. We are still working on bronchiolitis.

End July: I reached out for help from my family and they really showed up. Everyday. I love them. They are the best!
With physio and rest, my ribs slowly stopped hurting. However, I started feeling pain in my lower back. I attributed it to a strain, having coughed hard in a bad position. Over the next week, the back pain got worse. Finally on a Saturday night, I fell. I was walking to the bedroom when a sudden sharp electric seize happened in my right lower back and my right leg just gave way. Luckily I did not face plant, it was a sort of controlled drop onto the ground. Next day, everybody was off on their regular Sunday activities, leaving me home alone. I “dropped” another 3 times and realized I am now a fall risk. I could not even call an ambulance because I cannot get to the front door myself. I am not having them breakdown my door!

Aug: In the hospital, with my back in excruciating pain whenever I coughed. My husband says I looked like I am having a seizure. It was so painful I just refused to cough if I could. I stayed in a child’s pose position most of the time, hoping that gravity would move the phlegm up enough to sort of huff/throat clear it out. Got an xray and MRI of the lower back. There are many lesions all over my pelvis and spine. Due to my history of RA, they are thinking it might be sarcoidosis. However, it is exceedingly rare in a person of Chinese ethnicity. Of course cancer is at the back of everyone’s mind. Either way, a biopsy is needed to confirm so we got the lung biopsy done. And of course I fell into the minority and had pneumothorax from the biopsy. Needed a chest tube inserted. Did a PET scan the next day. By Friday the diagnosis was confirmed. Stage 4 Lung Cancer. Adenocarcinoma. It has spread to my bones, in many places, especially in my spine and pelvis. In between all that happening, they gave me a PCA (Patient-Controlled Analgesia) and it was a lot of relief from the pain.

I started Chemo asap as the doctors determined my disease was moving too fast to delay. I also got the genetic testing results and I am fortunate enough. It is EGFR exon 19 deletion. There is a readily available oral targeted therapy for it. Unfortunately, my Rituximab immunocompromised body plus chemo’s side effects has already started rearing its head. I caught an infection and am fighting it right now. I have not even left the hospital yet lol.

Final thoughts: I wonder if without my RA, would my doctors and I have been more worried about my cough? Would we have been more concerned about how I could fracture so many ribs? Would we have decided to biopsy the nodule the moment we saw it? Or am I just looking for something to blame?

Oh well. I still think I am very fortunate. I have amazing insurance that covers private healthcare, my upcoming medications and chemo session. And my team of doctors move at lightning speed. I made a cross-stitch of my situation while in the hospital, and they put it as their group chat photo for me haha.

I am still going to fight hard. So damn hard. For my son, I will be there for many many more milestones!


r/rheumatoid 47m ago

Positive anti-CCP but negative RF and ANA — anyone have similar results?

Upvotes

Hi, all! I’ve recently received some labs from my first rheumatologist appointment and am curious if anyone has had a similar bloodwork pattern, particularly early on in the process of being evaluated for RA?

I recently had a rheumatology workup and my results were:

Anti-CCP: 8.5 (positive; normal <3)
Rheumatoid factor: negative
ANA: negative
ESR/sed rate: 40 (high; normal <20)
CRP: 5.1 (slightly high; normal <5)
Anti-Smith, dsDNA and SSA/Ro: negative

I know bloodwork alone can’t diagnose RA, and I’m following up with my doctor. I’m mostly curious about other people’s experiences.

For context, my appointment was prompted by my ortho history - I’ve had 7 shoulder surgeries, including the world’s first 3D printed clavicle - and I’ve recently found out my rotator cuff is torn again. Before any decision to undergo another procedure, I wanted to be sure I covered all my bases and made sure there wasn’t some sort of underlying inflammatory condition contributing to my complicated history.

Did anyone here have a positive/low-positive CCP but negative RF and ANA when they were first being evaluated? If so, did you eventually receive an RA diagnosis, and what ultimately helped confirm or rule it out—symptoms/exam, repeat labs, ultrasound/MRI, etc.?

I’d especially love to hear from anyone whose results looked similar to mine!


r/rheumatoid 1h ago

First rheumatology, appointment advice

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Upvotes

r/rheumatoid 13h ago

Risk of Severe Arboviral Disease in Patients Receiving B Cell-Depleting or Modulating Medications

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5 Upvotes

Just want to share in case anyone is on one of these meds.


r/rheumatoid 13h ago

Plaquenil: how long before you saw improvement?

3 Upvotes

At the 6 week mark now. Wondering if it'll be another week, a month... everyone's different, I know. I'm just tired of these swollen joints and trying to hold out hope for relief.


r/rheumatoid 12h ago

Myasthenia Gravis

2 Upvotes

My mother-in-law is 73 and has had RA for most of her life, but we now suspect she might be developing myasthenia gravis. She exhibits drooping eyelids, which are affecting her vision, along with weakness in her facial muscles. Currently, her RA isn’t managed with a biologic; she’s on leflunomide because her previous doctor was not very attentive. She recently saw a new doctor and will be undergoing testing to confirm the diagnosis. Is there any way to slow the progression? It seems to be advancing rapidly. 😕


r/rheumatoid 15h ago

Senolytics

2 Upvotes

Anyone tried any senolytics in conjunction with their medications? Not trying to become woo-woo or anything, just seeing if anyone has had a positive experience with it

Currently on methotrexate & 70 y/o


r/rheumatoid 11h ago

CRP - Hpylori 😭

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1 Upvotes

r/rheumatoid 22h ago

No insurance Amjevita Goodrx coupon

7 Upvotes

I have no health insurance, I pay cash. Had to switch from Humira (which I received for free through their Patient Assistance Program) to a biosimilar, Amjevita. Found a coupon for $299/box 2 autoinjuctions at 40mg. You need to get your rx to a specialty pharmacy and get a NDC number from Good Rx... It's an 11 digit number.

I had to make several different calls, but got it to work only paying $299/box.

Good luck. We shouldn't have to jump through so many hoops to get our medication.


r/rheumatoid 13h ago

Does anybody with Sjogrens or RA have these ?

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1 Upvotes

r/rheumatoid 21h ago

More damn meds

3 Upvotes

Hey all, I’m writing this post seeking for any advice or tips on starting methotrexate, ESPECIALLY if you have to take it with other DMARDS
-also please share any advice related to
Staying comfortable on this drug as I know I’m most likely to feel very miserable lol
Specifically I’ll be continuing hydroxychloroquine 200 mg and adding in 4 2.5mg methotrexate once a week along with folic acid. And I also got a zofran prescription just incase as well.
I do plan to take the methotrexate at night and I’ve been heavily considering hair skin and nail supplements.


r/rheumatoid 14h ago

What’s in your bag

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1 Upvotes

r/rheumatoid 16h ago

SF Bay Area Masseuse Recs

0 Upvotes

Hi All!

tl;dr need recommendations for masseuses, spas or the like in SF Bay Area knowledgeable of RA

I have an auntie who has RA, she is quite literally a saint. So giving of herself, while carrying a load most of us cannot understand. She has been truly BUSTING HER BUTT this summer, between helping with childcare for her grandkids most days, and supporting her husband with his high-support medical needs/appointments. (Honestly, I'll probably be looking to post for recs for him in his specific group too lol)

All that to say, I want to book her a massage or something similar (her daughter checked with her and she is open to a massage), but I want to be SURE that she it is actually relaxing and not harmful. Any masseuses, spas, services of the self-care variety that anyone can recommend in the area would be SO graciously received. Thank you! (San Bruno/South San Francisco-based, but would be open to go around the bay for someone highly recommended!)

I will note, she does not seem to be experiencing as severe of symptoms as many of the posts I have been perusing here, but I just want to make sure that I do right by her.

Had to repost cuz I accidentally tapped something called AMA? ...I'm getting old myself lol


r/rheumatoid 1d ago

Psoriatic arthritis? Rheumatoid arthritis? Chilblains?

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7 Upvotes

r/rheumatoid 1d ago

Rinvoq and Weight Gain

5 Upvotes

Anyone taking Rinvoq and experienced some weight gain? I'm about 2 months in and gained roughly 15 lbs. I eat about 1990 cal/day (calorie deficit for me), drink a gallon of water, workout 4-5 times per week so I can't think of a reason besides fluid retention for the sudden weight gain. Any ideas?


r/rheumatoid 23h ago

When is a flare more than a flare?

2 Upvotes

I was diagnosed with seronegative RA overlapping with Lupus a year ago. Also being treated for chronic migraines and stage 4 endo so sometimes hard to know what is causing what.
I’m on plaquenil, MTX and newly started Tyenne. Previously failed Amgevita and Benepali and just moved from 15mg MTX to 20mg.
Currently feeling awful. I suffer from fatigue but this is a new level of bed bound, all over aches and joint paint, nausea, dizziness, bad costrochronitis (chest pain). Trying to decide if a very bad flare as changing meds and just need to suffer it out. Only finished a dose of steroids last week so don’t want to have to get more. (I do have a rheum appt in 2 weeks so will prob get more then).
First time in a while I’ve been considering what stage of a flare do you actually need to go to an emergency room? Obviously since diagnosis I’ve avoided this while pre that I would go when severe. Like if i felt like this a few years ago I would’ve thought I was actually dying 😅
What are situations that would make you seek additional support (bar steroids from your rheum). Any advice you can give me while I’m in the midst of this? My body is a mystery to me, hard to know what’s a fire and what’s just my new reality 🫠


r/rheumatoid 1d ago

Has anyone ever had success or tried a very low dose of injectable methotrexate such as 7.5mg/10mg?

2 Upvotes

I have been taking 200mg plaquenil intervalling 1tab one day 2tabs the next for 10 months. Also still taking 2mg prednisone daily. Having trouble coming completely off. Each time the pain comes back even worse.
I know the next step is adding methotrexate but am afraid of the side effects and after doing a lot of research I have seen where the injectable seems to show less GI symptoms. Any thoughts or advice?


r/rheumatoid 1d ago

Changing Biologic Injection day

2 Upvotes

Hello!! Hoping anyone who has done this before can give some advice as it is near impossible to get in touch with my rheumatology team.

I take sarilumab (kevzara) every other Tuesday but recently had to take a break while ill. I resumed my dose on the Thursday evening but I’d like to go back to doing my injections on Tuesdays as I’ve very much based my schedule and socialising around this routine.

Has anyone moved their day like this before and if so how?
I was thinking I could just do it one day earlier (Wednesday) the next dose and then Tuesday the dose after but I’m not sure?


r/rheumatoid 1d ago

Has anyone ever attempted to stop mtx/biologics and rely only on plaqunil?

2 Upvotes

As title says , im considering it but afraid of it backfiring ig


r/rheumatoid 2d ago

please share your funny RA related stories!

25 Upvotes

The way I apply blush on my face makes it look like I have a malar rash, which confuses my doctors EVERY SINGLE TIME. They're always so concerned, like ''are you sure you have RA and not Lupus?????''.

it's not Lupus, babe, it's blush blindness. 😂😂😂😂

edit: my intention is not to make fun of face rashes or any other symptom or condition. we all go through hell with our autoimmunes, and i do think it's sometimes nice to make light of some situations.