RA flare following covid infection?

BettyMac

I had Covid last December and have recently been experiencing far more pain and loss of mobility than usual. It’s been gradually getting worse since about mid-January. My hands and feet are worst affected and it’s often mid afternoon before things free up and the pain eases.

For the last few years I’ve been in the very lucky position of almost complete remission, thanks to the DMARDs, so this flare has come as a bit of a shock.

I know that biologics sometimes stop being effective so it might be that this, rather than Covid, though there is some suggestion in the scientific literature that an increasing number of people are having post-covid joint inflammations.

I’m due to see the Specialist Rheum Nurse in a couple of weeks and will ask her advice.

Just wondered if anyone else suspects they’ve had a post-covid flare?

Emmasknackeredjoints

I was fit and healthy before covid. Within weeks developed reactive arthritis which was not treated well at all. I'm 4 yrs into thsi painful condition, made worse by the AZ vaccine.

I think in time the real damage caused by covid will show. I'm only being taken seriously now due to the numerous of new people with it.

Naomi33

I too was fit and healthy before covid but definitely agree with your covid comment and the damage it has and is continuing to cause people 😢

[Deleted User]

I agree too, I had COVID from Boxing Day through January and have had a similar experience. I have osteoarthritis but mildly compared to many people here, however as I recovered from the virus I noticed an increase in pain and less mobility all over but particularly in my hands, wrists and feet.

BettyMac

Sorry to hear you’re all having post-covid problems, Emma, Naomi and Izzy. I hope things will improve soon for all of you.

I suppose we’ll know a lot more about this nasty virus in a few year, once the scientists have had a chance to look at all the data.

Happily, my flare seems to have abated - fingers crossed, now that I can actually move them! - which is just as well because my clinic appt was cancelled and rescheduled 2 months later by the hospital.

KatyDid

Im in a limbo and just being fobbed off by medics. Ive had joint pain in hands for about three years but largely ignored it. I am a very low NHS user, well I avoid doctors like the plague tbh. Last Summer I started breathlessness and heart pain ended up in hospital showing troponin in blood which means heart damage, they gave me strong drugs that gave me fits, then told me it was anxiety and sent me home basically blaming me for wasting their time. Since then I've paid to see a private heart consultant, a private Rheumatoid consultant, had scans heart and hands, but am no further forward. They can't find any thing wrong with heart or arteries. I have daily heart pain bad enough to warrant taking painkillers , my life has stopped. Until last summer I was exercising, working online (copywriting) , running my house, gardening, zooming around various hobby and social groups, in short a normal life. Now I barely leave the house and a good day is one where I can get dressed. I can't face seeing friends either, a visit exhausts me and puts me back in bed for days.

An A and E doctor suggested long cov I d and when I researched, everything fitted. However the doctors tells me it doesn't even exist.

My hands show synovitis left forefinger, right middle finger, swollen and constant pain, I've lost manual dexterity and drop things all day long.

NHS doc told m @'he sees worse than me' and after shoving a leaflet in my hand told me 'it must be RA Bec its nothing else it can be". He said start methotrexate but I'm terrified it will suppress my immune system and make the fatigue worse.

Not one doctor has taken the time. to ask me questions they just tap at their computers barely look at you. except the private doctor, he was all smiles and sympathy but no help, he suggested gout and come back if it gets worse.

I can't understand how two RA specialists can't seem to clearly recognise RA when they see it ?

Is everything connected ? Is the fatigue and heart pain due to RA, or has the cov id caused me to get RA. There is no RA in my family at all.

Can anyone help me please.

Im near ready to book my flight to Dignitas.

noddingtonpete

Hello @KatyDid and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I've put some information in below which might be off help.

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

and

https://www.versusarthritis.org/news/2020/july/understanding-the-role-of-the-immune-system-in-fatigue-could-help-people-with-inflammatory-arthritis/

I hope that you can get to a diagnosis and then medication soon.

Best wishes

Peter

BettyMac

Hello, KatyDid

I’m sorry you find yourself having to deal with all this. Many of us have, at one time, felt such despondence and it’s not a good place to be.

Having generalised inflammation can be exhausting, and lack of sleep on top of that certainly doesn’t help.

It might be worth trying the meds that have been suggested as they should calm down your immune system and this may allow everything else to fall into better places. I was fine for several years on Methotrexate. Yes, it does have side effects - but so does having RA. You’re the only one who can make this decision so do as much research as you can before you make up your mind. There’s good info on this site.

Last summer, I was having some cardiac issues myself, mainly irregular heartbeat and episodes of tachycardia which came on for no apparent reason. I was greatly reassured when investigations, including a cardiac MRI, showed that everything was absolutely fine. I think worrying about missed beats was making things worse and sort of feeding the problem. Now that I know all is well, I can happily ignore the ectopics which still happen occasionally.

Re the difference in opinion on Long Covid - the NHS website states that “Long Covid is a new condition which is still being studied” so some people do recognise it. Although research is ongoing, it does appear that people do eventually, in the main, recover - which is small consolation for those who’ve lost several years of their lives to it. We’ll know a lot more about this virus, and its effects, in the future - though that’s no great help in the meantime!

According to the Specialist Rheum Nurse I saw last week, it certainly seems that Covid infections are causing RA flares for many people.

I’ve always thought that being told “others are far worse off than you” is a particularly daft thing to tell a patient. Yes, there are many worse off - but knowing that doesn’t actually wipe out the issues you’re experiencing.

I do hope that a way through all this can be found. Please don’t give up. Come here and vent when you need; there’s usually someone around who will recognise what you’re feeling and be able to tell you what worked for them.
The Living With Arthritis part of the community tends to get a lot more traffic these days than this Covid section, so you may find that a better place to post.

Very best wishes - and I do hope things improve for you

jamieA

Hi @BettyMac

I've just come across this discussion and your posts within it. I'm struck by the similarities between your situation and mine. I was diagnosed with PsA in late 2020 having most probably - according to a covid consultant - had covid in March 2020. In late May 2021 I was admitted to hospital with atrial fibrillation and tachycardia. A number of rheumatology medics I've seen have suggested that covid may have caused the PsA and the cardiologist I see said the same about my heart issues. In fact the cardiologist said his workload had increased significantly since covid and he believed there was a direct link. I do wonder however if the medication I was on at the time for PsA had anything to do with it as the 2nd time I was admitted with tachycardia I was seen by a rheumatologist - not a cardiologist - and he halved my MTX immediately.

I'd had psoriasis for 50 years before the PsA diagnosis and been diagnosed by my GP with plantar fasciitis in 2018 and trigger finger in 2019. I'd also at various times over the last 30 years been treated for lower back pain as I'd been diagnosed with a dislocated right sacroiliac joint all those years ago. It turns out that enthesitis - which I have and is commonly a subset of PsA - can be mistaken as plantar fasciitis. The orthopaedics consultant I saw in March this year for the 4th time regarding my trigger finger out of the blue said that it was a known relation to PsA. My rheumatologist said an MRI in 2021showed my right SI joint showed PsA damage.

So I wonder now whether I'd had PsA at a low level that hadn't been diagnosed well before covid came along and covid effectively supercharged it. I've read a number of international medical papers reporting individual cases of patients who have been diagnosed with PsA after a covid infection. Unfortunately there doesn't seem to be much in the way of further investigation into this.

BettyMac

Hi JamieA

I can see you’ve been having even more “fun” with autoimmunity than I have. Ouch!

Thank goodness for DMARDs!

As you say, lots of similarities between us. I suspect a lot of what I’ve been experiencing lately is enthesitis too - and I do have some skin and toenail signs & symptoms of psoriasis, diagnosed by a dermatologist.

My basic diagnosis is still RA as I’m seropositive - and although I do think it may be PsA, I’m not too worried about the labels because the treatment is the same, just with added steroid ointment now and again!

It’s somewhat confusing because all the literature says RA and PsA rarely co-exist.

I’ve been in the very lucky position of being well controlled, officially “in remission”, for several years up until that Covid infection before Xmas. Since then, I’ve been feeling quite sorry for myself - RA flare, a couple of nasty respiratory infections (not covid) and generally fatigued, creaky and cranky.

The cardiologist I saw initially suspected myocarditis, following vaccination/exposure to Covid infection - though the main demographic for that is fit young men, not post-menopausal women, he said that cases had been found in all age groups.
After all the tests showed zero damage to the heart muscle, he is happy for me to continue being vaccinated.

In many circles, Covid is still regarded as a nasty type of flu - a respiratory disease - but it’s becoming more apparent that the virus affects the vascular and immune systems too.

My approach is still one of Covid avoidance.
I do not want another dose so have to risk assess each and every social situation. The constant need for risk/benefit analysis is tiresome; some things are worth a bit of risk, others are not. I am not prepared to forego contact with my grandchildren, darling wee vectors of infection though they be!

I still mask in busy, unventilated places, accept every vaccination offered, (now up to #9), am diligent about hand-washing/disinfection, and ventilate my home if we have visitors. It’s always Fresh Air Fortnight here.

I’m so looking forward to being able to do a bit more mask-free, outdoors socialising, now that the weather has improved.

BTW - there’s been an ongoing disagreement about the usefulness of masking but a new meta-analysis of all the data confirms that a good quality mask(FFP2 or 3) or respirator, worn correctly and appropriately, will indeed protect the wearer and is worth doing to avoid covid and respiratory infections of any kind.

This is the link https://journals.asm.org/doi/10.1128/cmr.00124-23

(The lead author is a Professor of Primary Care at Oxford University)

jamieA

Hi @BettyMac

I take sulfasalazine, MTX and adalimumab for my PsA. Adalimumab is an anti-TNF alpha biologic. Here's a quote from the PubMed website :-

"In COVID-19, TNF-α-mediated inflammation can cause detrimental tissue damage and gradually promotes lung fibrosis, which later results in pneumonia, pulmonary edema, and acute respiratory distress syndrome. "

I had about 10 bouts of chest infections in the 12 months after March 2020 - 3 of which were classed as pneumonia. When I was admitted to hospital the first time with pneumonia - 3 weeks after my PsA diagnosis - I was more concerned with the pain in my joints. It was the first time I heard of CRP blood tests and at it's worst my CRP was 340. Since CRP is an indicator of infection and/or inflammation the medics couldn't work out whether the PsA or pneumonia was causing this.

So there does seem to be at least a circumstantial connection.

BettyMac

CRP of 340! Ooof!

Sounds like you’ve had a rotten few years.

I’m on Benepali, another of the anti-TNF biologics. Up until Covid, it was a game changer for me. The down-side is the increased vulnerability to infection because of the immunosuppression. Definitely a two-edged sword.