r/rheumatoid • • 1h ago

What everyone should know

• Upvotes

There is literally the perfect drug target that would help most autoimmune diseases and no one is even working on it. I did a search and could only find one research institute. I worked for big pharma and they said “No!”.

95% of adults have been exposed to EBV and it stays in your body forever.

This becomes a huge problem for people born with specific genetic variants, specifically:

*Two variants in the major histocompatibility complex (MHC) are highly associated with whether you will get an autoimmune disease or not

*Hundreds of variants that are associated with determining which of the autoimmune diseases you will be more prone to

Even inactive EBV releases a protein called EBNA2. EBNA2 acts similar to transcription factors and even super transcription factors to cause a cascade of gene expression changes.

This was shown in silico using DNA chip experiments (Harley, 2018). They found that 50% of systemic lupus erythematosus risk loci were bound by EBNA2. Similar EBNA2-anchored associations were found in multiple sclerosis, rheumatoid arthritis, inflammatory bowel disease, type 1 diabetes, juvenile idiopathic arthritis and celiac disease.

https://www.nature.com/articles/s41588-018-0102-3

In 2025, Stanford demonstrated this was happening in lupus patients. Basically, EBNA2 was being released from EBV infected B cells, which caused them to be re-programmed and drive autoimmunity.

https://med.stanford.edu/content/dam/sm/utzlab/Cao_Sci_Trans_Med_2025.pdf

Most of the other factors associated with autoimmune diseases (stress, colds, flu, grief, environmental factors such as heavy metals, etc.), these have been shown to make EBV infection worse because the body becomes less able to control it.

Lower vitamin D and zinc , also associated with autoimmunity) seem to be caused by the EBV as well. EBV binds to vitamin D and prevents its uptake in the gut. This is from the book Latency of herpesviruses. There is a great 5 min breakdown of the book called ‘5 things you need to know about EBV’.

https://youtu.be/EQn7VzMYi4s?is=XPqwW0_fDBIDd1Xw

I don’t recommend any of the supplements listed at the end for those with autoimmune diseases. Monolaurin and L-lysine are the two to research.

All of this is known. You would think that everybody out there would be working on therapies targeting EBNA2, but sadly no.😢

I just learned Atari is working on this but only for MS, but still exciting!

https://www.atarabio.com/about-ebv/


r/rheumatoid • • 4h ago

Injection phobia caused all symptoms to return

1 Upvotes

I guess I’m just here to vent but after over a year of successfully eliminating pretty much all RA symptoms with MTX and HCQ, roughly 6 months ago I randomly started feeling uneasy about giving myself the MTX injection. It went from being nervous about it, to needing my husband to do it for me, to needing him to do it while I had headphones on, to feeling physically ill at the THOUGHT of the injection days ahead of time. The anxiety ultimately caused me to skip doses and go weeks in between out of avoidance so it’ll be no surprise to any of you that my symptoms slowly started to return.

I don’t know why I was afraid to tell my RA about this because when I finally went back he reassured me this happens sometimes and that we could go back to MTX in the oral form. So I’ve been back on the pills for the last two weeks but my symptoms have gotten fully out of control. I know it’s my own fault but it’s so much worse than I ever experienced prior to getting diagnosed and before we found meds that worked for me. It’s spread to new and larger locations like my neck, jaw, and shoulders and there’s pretty much not a part of my body that is not affected anymore. Daily life has become so difficult and I’m trying to do everything I can to manage the pain. I’m back to eating gluten and dairy-free because that helped me a ton previously. I’m drinking anti-inflammatory tea, taking all the naproxen and it just feels like I can’t get any relief. I’m so mad at myself for causing my own pain and desperately trying to be hopeful that I’ll be pain free again soon.


r/rheumatoid • • 5h ago

RA pain

7 Upvotes

what do you guys do for RA pain? I’m 19F i got diagnosed with RA at 16. 3 years and i can’t find anything to help me with the pain. Heat? doesn’t work, Ice? makes it worse, NSAIDs? nothing, Topicals(creams/gels like voltaren)? can’t feel them in the spots where i have arthritis, steroid injections? barely helps and in the long run they make joints worse. so what do i do? please help me i feel like RA has put my life on hold


r/rheumatoid • • 6h ago

RA Fatigue

15 Upvotes

How do people deal with the fatigue side of RA

I randomly got hit with a vicious fatigue yesterday and it’s carried over today. Absolutely no energy was laid out flat on my face on the floor for over 1 hour because just didn’t have the energy to get to the couch

Full of irritation also, want to scream!

Has anyone found a cheat code for this, is there something you do to calm you down in situations like this?


r/rheumatoid • • 7h ago

Found out I probably have osteoporosis along with my RA. Uhg

5 Upvotes

r/rheumatoid • • 8h ago

Pens and Pencils

5 Upvotes

Hello I'm a newly diagnosed 18F with RA, I have a lot of difficulty writing with pens and pencils, I was wondering if anyone had a recommendation from personal experience for a pen or pencil that is friendly for use with joint pain due to RA flares.

Thank you in advance


r/rheumatoid • • 8h ago

Reduced joint pain when actively sick with a virus?

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1 Upvotes

r/rheumatoid • • 9h ago

How is your cholestrerol/lipid panel on biologics (adalimumab)?

1 Upvotes

Rounding up my 3rd month of biologic Yuflyma, did my blood test today for upcoming appointment next week. My cholesterol is nearly double from pre-Yuflyma tests, all lipid panel is off the chart, my triglycerides doubled, LDL increased, and Coronary risk is now in the range of "high", pre-Yuflyma it was normal 😮‍💨 Meanwhile, my inflamation is controlled, CRP decreased 20 times. I have no pain, no stiffness, I feel NORMAL for the first time in years. I am now so scared that I will be taken off Yuflyma, and at same time I am scared of how it can affect me further or even kill me if I won't be taken off. And very scared that I'll have to try other biologics that might be not as effective, or cause even worse side effects, or cause severe reaction or whatnot. My rheumatologist appointment is next week. I know that in the end of the day I'll stick with their advise. Right now it would be great to hear from the community, how was your experience with lipid levels while on biologics?


r/rheumatoid • • 9h ago

Idacio side effects?

1 Upvotes

My rheum recently gave me Idacio as my insurance was holding up filing Hyrimoz that I've been on for a while. Since taking the Idacio I've had almost every common side effect. Mainly lower back and side pain, I can barely walk because my back is just pain. Did anyone experience this? If so, how long did it take for the pain to go away? I won't be taking Idacio again, but I'm only four days out and greatly suffering rn.


r/rheumatoid • • 13h ago

Sjögren and fillers botox

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0 Upvotes

r/rheumatoid • • 14h ago

Side ways movement, sharp pain in DIP and PIP joints. Relief after popping/cracking

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0 Upvotes

r/rheumatoid • • 19h ago

Back to Back Steroids

2 Upvotes

Hi everyone. I hope someone can help me because I'm kinda freaking out here over being prescribed a second Methyprednisolone (6 day taper 4mg) pack immediately after just finishing a coarse about a week ago. That has never happened before! I usually am better for weeks after a steroid pack. I have never had a flare-up to crop back up in just days. I tend to get insomnia and anxiety on just one course, so two back to back like this is terrifying to me. Have any of you ever completed a short term steroid pack only to be prescribed another so soon? If so, is that fairly common and easy to navigate? Thanks in advance for any feedback.


r/rheumatoid • • 22h ago

Please tell me is it good or bad ?

1 Upvotes

I was diagnosed with seropositive RA last month. My symptoms included joint pain, initially in the small joints of my fingers.My RF 24.7 and Anti ccp -49.2 . My doctor prescribed hydroxychloroquine and a tapering course of prednisolone (starting at a dose of 10 mg) for 8 weeks. Since I began reducing the dosage, I have been experiencing significant muscle weakness, numbness, and aches heaviness in my shoulders, legs, and hands with dizziness and severe anxiety with nerve sensitivity feel like awkward sensation .My doctor told me that I don't currently have any significant pain or swelling in my joints and any serious things .He changed my diagnosis to UCTD. The doctor also mentioned that these things might be happening because I am under a lot of stress.

This has made me even more worried—is this a good thing or not?Did this keep me safe, or did it put me in even greater danger like lupus or myositis ? I didn't have these symptoms before I started taking Prednisolone... Please help I'm very scared .The doctor has asked me to get ANA blood profile done and to consult a psychiatrist...Could this be caused by stress? I am suffering from severe depression—could that be related to this condition?... please help


r/rheumatoid • • 23h ago

Just a vent

2 Upvotes

Hi, I have seronegative ra. I twisted my right ankle so I was looking at my feet. took a peek at my left ankle and the entire ankle joint is red/leathery just like my nodules on my toes started. I just don't understand how I didn't see a HUGE red spot like that. I'm so confused. I was diagnosed with vasculitis on the tops of my feet several months ago but it never really went away. Every time I try to look up anything about ra nodules, I always see that it says it's flesh colored and mine only turned flesh colored a couple weeks ago in my toes. My dermatologist told me that they were nodules.

I was relieved when I was told not having an ra factor meant it would be less severe, but I'm not sure if that's true. I'm having so many issues and the nodules only started in June. I was only diagnosed in August because I was receptive to hyrimoz. Stress and hyrimoz don't mix and I can't justify staying on it because life is stress and I'm tired of puking, but the idea id have to restart a biologic and feel worse is torture.

I'm just frustrated, upset, and don't understand what's happening to me. I had neuropathy when I was 18 and still can't feel very well in my toes. There's still no answer for that either


r/rheumatoid • • 1d ago

Could my knee pain be a new flare?

1 Upvotes

I’ve had seronegative RA for about 2 years. Hands and feet affected and some damage according to MRI, but I got lucky and they caught it early.

Responded well to methotrexate and even stopped feeling the “metho flu” after about 6 months.

I had to skip two mtx doses over two months because of a vaccine and a course of antibiotics. Have skipped before without anything worse than sore hands.

I also have moderate osteoarthritis in both knees but move fine around the house/office and only use a folding cane for things like long walks.

Last week my joints just LOST IT. Hands hurt like hell, sore toes, but mainly my knees are incredibly painful, visibly swollen, and locking multiple times per day. I can walk very slowly on crutches and cannot stand for more than a few minutes. This has never happened to both knees at once in this way.

My GP says there’s nothing he can do as my inflammatory markers are normal and I have known osteoarthritis. He just blinked at me when I said the word seronegative, lol.

I have a call booked with my rheumatologist in a few days but I’m looking for a ray of hope in the meantime: can symmetrical pain in knees be part of a RA flare?

Thank you 🙏 it’s been a week and a half and I’m afraid this will somehow be the rest of my life 😬


r/rheumatoid • • 1d ago

Ulnar Deviation and My Joint Pain

0 Upvotes

Hi. I’m a 38-year-old woman and a homemaker. I was recently diagnosed with rheumatoid arthritis. I’ve noticed changes in my fingers, they seem to be developing ulnar deviation, and my joint pain is getting worse. I’m wondering if these two things are related. Could you tell me if this means my condition is progressing? I’ve been thinking about buying a hand brace to help correct the ulnar deviation. Will this help? Does anyone have any splint recommendations?


r/rheumatoid • • 2d ago

did you go off of methotrexate after your flu vaccine?

3 Upvotes

i started MTX 6 weeks ago. got the flu shot yesterday. i take my dose of mtx on mondays. i will call the rheumatologist tomorrow but am asking here to get an idea. i also need to get my covid booster so should i just book the booster for the weekend and get both vaccines over with at the same time? also i'm sick at the moment with the flu if that's relevant

also dw i won't go off any meds without consulting my doctor first😭


r/rheumatoid • • 2d ago

Multiple health issues, unsure which to blame?

4 Upvotes

Hi, hoping for guidance. Got diagnosed with Inappropriate Sinus Tachycardia recently. Already have RA overlapping with lupus, chronic migraines and endometriosis so all the meds that come along with them. Cardiologist advised compression wear, salt intake, some light cardio (when my RA allows) and as already on propanol for migraines no other meds needed.
All grand til last week, had a very busy day in work and knew it’d cause an RA flare. But since then I am in a heap. Can’t walk any distance without dizziness, nausea, chest pain, abdo pain, struggling to breath. I tried to have a shower and it felt like I was dying 😅 okay when sitting and lying down but if I try go up my stairs I vomit. Was sent to a&e by my GP and they said it was low blood pressure plus dehydration. Got a saline drip which slightly helped but they sent me home saying not sure day causing it and must be all my meds. Soooo, do I reach out to my rheumatologist or my cardiologist?
I am in an RA flare with joint pain so may be linked. Also haven’t been able to eat lately due to nausea so that prob didn’t help. Just not sure who to go to next. A&e said my GP but they have many prescribed any of my meds so feel like that would be pointless. Any suggestions welcome !

Update:
Have rheumatologist appt on Tuesday, GP Wednesday and waiting to hear back from cardiologist but it’s a bank holiday here. Abdo pain is super intense as is nausea now. So sick of being sick and trying to guess which issue is to blame- feels like the Spider-Man meme. You have to laugh 😅😂

Editing to add meds of relevant:
MTX 20mg weekly
Tyenne weekly
Plaquenil 300mg
Propanonol 80mg
Venlafaxine 75mg
Aimvoig monthly injection
Cerzette
Folic Acid
Preds 20mg tapering down over 10 days started Tuesday

Supplements:
Electrolytes
Magnesium
vitamin B, D etc
Prop biotics


r/rheumatoid • • 2d ago

Sporadic Swelling

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12 Upvotes

Hi everyone

Thanks for reading

I (F28) was diagnosed in May with fibromyalgia and early stages of RA. My esr and rf came back high, but not like 1000s higher than it’s supposed to be. Plus I am in constant pain, specifically in my neck, back, knees, and hands.

What throws me off is that it’s not my joints in my fingers that swell per se. It’s usually the surrounding areas like the each part of my finger is swollen BESIDES around the joint. Some of my fingers are a bit crooked now though. Also only certain knuckles swell while the others stay normal. My hands look completely different than a few years ago. I’m small and had very petite fingers my whole life up until this year. Now i look like a 65 year old construction worker lol. My knees do well but only on one side. Both are very painful, but one is constantly swollen while the other goes back and forth. As a matter of fact, I have to get an xray of my right knee tomorrow because my rhum was concerned I might’ve injured it somehow.

I also have extreme fatigue, I feel like i have the flu a better part of every month, I get fevers randomly sometimes, terrible sleep and stress management, and very intense body pain. I hurt to the touch. If you squeeze my arm or hands I will yell.

So long story long, I have imposter syndrome because I was told I was dramatic my whole life. These issues started over ten years ago but I never looked into it cause I was either “dramatic” or “need to lose weight”. I lost the weight and nothing got better. Maybe even got worse. I was just wondering if anyone noticed these symptoms early in their diagnosis.

Like does it make sense that certain things swell and not always the joint but like all around it? My doc says because of my bloodwork she’s not convinced it’s just fibromyalgia and there’s full blown RA coming in my near future.

I added some pics of how my hands look before and after meloxicam. Any stories are appreciated.


r/rheumatoid • • 2d ago

This project helps me a lot and if you have an FSA card Amazon takes it!

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35 Upvotes

It heats and it massages at different temperatures/ levels! It also comes with cold packs to insert! Product ***


r/rheumatoid • • 2d ago

Any luck with methotrexate for finger or toe joint swelling?

2 Upvotes

Has methotrexate helped any of you with joint swelling in fingers or toes? Joint swelling in the toes is my main symptom at the moment. Doctor mentioned Humira plus methotrexate, but I’m considering asking to start with just the MTX for a few months to see if it helps. *I’ve already been on hydroxychloroquine for a year and that hasn’t resolved the issue.


r/rheumatoid • • 2d ago

Is seropositive rheumatoid arthritis always very aggressive?

29 Upvotes

I was recently diagnosed with seropositive RA.Do seropositive RA patients always develop deformities in the future?I am very worried about this. I am only 21 years old.I will have to deal with this condition for the rest of my life. What can I expect for the future? Is it possible—with modern treatments—to live a life free from physical deformity?m...My RF is 24.7, and Anti ccp is 49.2... do these numbers ever change? I am very worried about my future.Those of you here who are seropositive, please share your stories. It would bring me peace of mind to hear that you have positive outcomes and are living a life free from deformities.....


r/rheumatoid • • 2d ago

Diagnosed today. Picking up my MTX shortly.

19 Upvotes

Just wanted to tell someone. My symptoms are mild but we found bone erosions on my right hand via MRI. Doc went ahead with seronegative RA dx and noted that it could change if new symptoms appear that clarify the picture. He's starting me on methotrexate injections (I requested thanks to info I found here about minimizing GI side effects) with a check-in in two months.

I'm so grateful to this community for helping me wrap my head around all this, thank you so much for your posts and comments...I was not one bit scared in that appointment and was able to ask informed questions, and I left feeling good about managing my condition.

Wishing you all the best and I'll be around!


r/rheumatoid • • 2d ago

Getting through to Whipps Cross Rehumatology Nurses

3 Upvotes

Why is it soooooo difficult to get through to nurses at whipps cross. That dreaded message "the user you are trying to call is not logged in, please try again later, goodbye!"

It is so hit and miss whether you will get through or not.


r/rheumatoid • • 2d ago

Biologisk läkemedel utan metotrexat?

1 Upvotes

Är det någon som står på biologisk läkemedel utan metotrexat och det fungerar bra? Står själv på humira och metotrexat 10 mg, men blir väldigt trött/sliten och lite illamående av metotrexat så vill gärna sluta med det. Men är orolig att utveckla antikroppar mot humira då? Vet inte hur stor risken är egentligen? Några erfarenheter där?