Trigger for RA

[pennefabredux]

Wondering whether you have identified the trigger that may have started you in the path of RA?

Diagnosed several months ago, mid 50s, with RA. Have been taking leflunomide. Now will be adding hydroxychloroquine. Early symptoms started in late December 2020. Saw my doctor in Jan/Feb and later referred to rheumatologist end of March. So fairly fast onset and all. Mostly hands are affected (painful, swollen, loss of grip) and the fatigue.

I was wondering why now?

Part of me wonders whether the shingles vax set this in motion (looking back, symptoms started appearing about a month after my second jab). Or was it combination of shingles vax, pneumonia vax and flu vaxes all at the same time. Can't tie it to covid vax because symptoms pre-dated those jabs. Or nothing triggered it and I just developed it.

Do you have any thoughts on what triggered your onset?

I believe, and my consultant agrees with me, that my RA was triggered by travel vaccinations. All my symptoms started within a month of them.

My rheumatologist asked if I had ever had a bad infection. I'd had flu when I was 37 and he reckoned that could have set the ground for tha RA that emerged in my 50s.

My consultant is convinced that glandular fever kicked mine off. Diagnosed 4 years but looking back I've had it a lot longer than that. I also had a hysterectomy at 29 and he's pretty sure that played a part.

Glandular fever as a teen was probably the primer and then a run of the mill virus a few years back hit my joints and started the RA.

My consultant thinks pregnancy was my trigger

Interesting about the glandular fever. I forgot that I had that about 38 yrs ago - but it was bad at the time and I was in the university infirmary for 3 weeks and constantly sick with strep throat for about 8 additional months (had my tonsils removed which ended the strep infections).

For dh, it was his first ulcerative colitis flare that's caused his.

Interesting reading. Could I be cheeky and ask for a bit of advice whilst you are all here?

I am early 50s and something has been going on for a a few years. I’m really stiff very often for a good couple of hours in the morning amd when I sit for ages, permanently knackered (even when I was for and could run 10k a few years ago).

Had a really bad foot the week that woke me up in middle of the night burning, other a bit sore and definitely swelling under one and in one knee, the other was tender if pressed the joint as were my shoulders and my hips ached too.

Hands not really painful though a little stiff and my grip is weakening and a couple a little lumpy around the joints. I guess looking bsckmi’ve had issues for years but it’s all kicked off more after Covid and a hysterectomy. Sibling has Ulcerative Colitis , cousin has T1 diabetes and thyroid issues , another has issues with gluten and another Non Hodgkin lymphoma, child has thyroid issues.

I have a GP appointment next week and am hoping for bloods and a Rheumatology referral. I assume if GP resistant I need to push? Apologies for butting in and thanks for any advice anyone can give.

I had glandular fever at 25, after which my energy levels never returned to peak. Third baby at 37, three months later, swollen hands, painful joints abs v tired. Blood tests normal, my GP just said be thankful it’s not RA when I asked him what was causing the symptoms.
I was finally diagnosed at 43 after inflammatory eye disease led a GP with a special interest in inflammatory arthritis to put my history of joint pain, fatigue, psoriasis, dry eye etc together.
The Rheumatologist took a proper history. He said I had the genetic base (grandmother with RA, grandfather with psoriasis). All it needed was an virus like glandular fever to flatten my immune system for the several auto immune conditions he diagnosed to hit. He also said pregnancy was a trigger.

Mine was an acute onset of severe RA so was clear it was triggered by Flu I had when I was 19 however I had already had glandular fever at 17 so there may also be some link there.

Psoriatic arthritis only started after coronavirus jab 🙄

Interestingly I also had glandular fever very badly - I often assumed cytokinin storm and have also ways seen my autoimmune issues in this light

@Volterra

I’m really stiff very often for a good couple of hours in the morning

^ This is a marker of RA. Exaggerate your symptoms a little if necessary just to get a referral. Good luck.

Thank you Prickles. I’m going Friday for blood test results but already decided I’m asking for private referral.

My hands and wrists have been swelling and other joints and at this point it really is limiting (why did I buy chunky denby plates with my Tesco Clubcard!) and everyone around me looking really worried about me.

I had glandular fever when younger - just before teens? First RA symptoms started 19yrs. A huge flare at 25 after which I’ve never since had any periods where I am not in pain. Severe stress I think triggered that. Went to bed ok. Woke up very much not ok.

I know six people with RA ages 40-60. Two men and four women. I think age/hormones is a factor, also there is a genetic element. Five of the six are smokers & all are drinkers. All bar one are slim. I have Sjogrens but not RA & am sure age/hormones, very low vitamin D & a virus triggered this. I believe vaccines, viruses lifestyle & a genetic element create a perfect storm that trigger many AI diseases. All the best Voltera, OP & everone else.

DH dropped an electric drill on his foot, unfortunately missing the steel toe cap, and that definitely started his as his foot has never recovered and the other joint pains started just after that.

He has a fabulous consultant though and is finally on the right medication for him which helps.

Volterra definitely get your gp to do full bloods and a referral to rheumatologist. They may want to wait until the blood results are back but to make sure you get one. You may need to push but see what they say when the results are back as they may show another route for you to try.
Dh doesn’t have much pain in his hands really but has certainly lost his grip. He has dropped a few glasses and cups over the last few years but is better since they found the right medication for him.

Thank you. I am negative for Rheumatoid Factor but elevated ESR (though not as high as it has been previously). Apparently I’m not eligible for NHS referral in my area due to negative RF but had already decided to ask for a private referral . GP agrees something going on amd said in my position would do the same and mentioned seronegative RA.

Psoriatic Arthritis is now also a possibility after speaking to my Dad who has just been diagnosed with Psoriasis. He spoke to my Aunt who has apparently had it for years as does my cousin and having a read it might explain something I have noticed in my nails previously .

GP said only Consultants can prescribe DMARDs. Given 20% of people with RA have negative RF, what on earth happens to those who can’t afford to pay to go privately?

@Volterra

Thank you. I am negative for Rheumatoid Factor but elevated ESR (though not as high as it has been previously). Apparently I’m not eligible for NHS referral in my area due to negative RF but had already decided to ask for a private referral . GP agrees something going on amd said in my position would do the same and mentioned seronegative RA.

Psoriatic Arthritis is now also a possibility after speaking to my Dad who has just been diagnosed with Psoriasis. He spoke to my Aunt who has apparently had it for years as does my cousin and having a read it might explain something I have noticed in my nails previously .

GP said only Consultants can prescribe DMARDs. Given 20% of people with RA have negative RF, what on earth happens to those who can’t afford to pay to go privately?

This is shocking. I'm negative for RF but my treatment is NHS. My consultant told me that almost half of people diagnosed with inflammatory arthritis are neg - it's unthinkable that they'd not be entitled to NHS treatment. It must be a postcode lottery type situation? Unless it's changed since my diagnosis ten years ago.

Write to your MP if you feel able. This is genuinely outrageous. RA can have serious consequences if left untreated and as you say, not everyone can afford private treatment.

Good luck with it all

OP how are you getting on?

My consultant couldn't identify a trigger but suggested a viral infection might have kicked things off, or smoking. By the time I was diagnosed I hadn't smoked for about five years but the fact I did in the past was enough. Smoking is one of the biggest regrets of my life.

There's quite a lot of autoimmune stuff in my family, too. My aunties had RA and I remember my dad being in agony with what he called his 'rheumatics'.

My consultant told me she thought mine was triggered by trauma - I fell and fractured my femur exactly a year ago today - and was diagnosed with RA in June. My mum had really severe RA and it’s always been a real fear of mine. Starting methotrexate tomorrow

So interesting. My rheumatologist doesn't even want to discuss the why or how this came about. He just wants to slow progression and keep me relatively pain free.

I have recently learned that my DM had discoid lupus and I have a DNephew with type I diabetes (this I've known). But no one else in my family has any autoimmune issues, so I've been quite interested in finding the why/why now.

I've been on leflunomide and hcq for several months now. As long as I eat clean, no processed food and very little gluten, I'm doing fine.

I'm not sure if they have told you about one of the side effect of hydroxychloroquine, I personally take take this medication daily, so I know what I'm talking about. You need to be certain to have an eye exam yearly as there is a possibility, it is relatively small, however, that will cause crystals to develop in your eyes which could lead to blindness. You need to have extensive eye exams to ensure there are no crystals developing in your eyes this requires an extensive eye exam that is specialized especially for this particular medication. Speak to your doctor about this specifically before you start this medication if you have any questions if they did not bring this up. I don't mean to scare you but you do need to understand that this is one of the potential side effects to this medication however small the chance of that happening.

I did have the baseline eye exam due to the hcq. My rheumatologist said I should repeat every few years. The ophthalmologist wants me back yearly. I'll stick to yearly.

Given other chronic conditions, I have labs repeated every 3 months and other testing to make sure the meds aren't damaging my liver further.

Ended up losing quite a bit of my hair recently. Not sure if it's related to the meds or something else. Really sucks.

@Volterra I hope you can get seen by consultant. Can't believe that you're not getting referral under nhs. It's not right.

I think it was a flu like virus kicked it off. It took a whole year of pestering the GP to get referred to a rheumatologist (who diagnosed RA in a few minutes of talking to me) despite being seropositive 🙄

Thanks penneabredux. I had a private appointment today. Am having further tests then going back. He has broached the subject of it may at that point be appropriate to discuss methotrexate depending on results. Think if anything it is Psoriatic Arthritis that is more likely in my case rather than RA.