Atrial fibrillation : Have any of you been... - PMRGCAuk

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Atrial fibrillation

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Have any of you been diagnosed with atrial fibrillation during your PMR journey? Last weekend I had heart palpitations and in a panic my husband called emergency services and the paramedics took me to hospital where I was stabilised and diagnosed with the above! They wanted to start me on anticoagulants which I refused until I had discussed matters with my rheumatologist. From what I have researched afib can be brought on byr steroids and autoimmune diseases and I wondered if anyone here might have some experience of this? Thanks x

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SheffieldJane profile image
SheffieldJane

Look to the right of an iPad or Laptop screen or scroll right down with your phone. You will find that Artrial Fibrillation has been discussed quite a lot and there are related threads to look at.

PMRpro profile image
PMRproAmbassador

I have a/fib - and the most likely cause was the autoimmune part of PMR having damaged the electrical cells in the heart, I have Sick Sinus Syndrome. It had nothing to do with pred, it first appeared at least 4 years before I started it but after the first signs of PMR appeared. It was later triggered with very severe episodes when I was given i.v. diazepam (it is a known adverse effect) but it is there all the time in the paroxysmal form.

It doesn't matter what the cause of the a/fib is, you need anticoagulant therapy to reduce the risk of a stroke or heart attack as a result of an episode - that is a bigger concern than the a/fib itself. Tiny clots form in the blood and sink to the bottom of the ventricles, the lower larger chambers in the heart. During episodes of a/fib (and other arrythmias)these clots are stirred up and can get into the circulation - and get trapped somewhere. Heart, lungs, brain, and cause a heart attack, pulmonary embolism or stroke.

My rheumatologist works in medicine too - but he defers all the a/fib discussion to the cardiologist. Before he came to be head of rheumatology overseeing the entire region I did have a few years under the care of the head of medicine who also did cardiology and had PMR/GCA as a special interest - now that was rather useful! But it isn;t something your rheumatologist will know much about.

Over time my arrythmia has worsened (that is normal as we age and a very high proportion of people have a/fib for no other reason) and I had episodes of tachycardia (fast heart rate) which were followed by bradycardias (slow heart rate) which had very long pauses and caused dizzy spells. Mine is also worse during a flare - and is obviously related to the vasculitis so it is important I keep it under control as well - that means I take more pred than most. In the end, 2 years ago I collapsed during a worse than usual dizzy spell - I was found to have 7 sec pauses in my heart rate. I was fitted with a pacemaker - that problem was solved! But despite the arrhythmia medication managing it quite well, I still have intermittent episodes of arrythmia that can last from minutes to over an hour which is enough to increase my risk of clots moving quite a bit. I was originally on a warfarin-type drug which meant checking my INR (clotting marker) monthly but it became unreliable and I now am on a direct acting anticoagulant called Pradaxa, taken 2x daily (it works for about 12 hours at a time and there is an antidote should I have an accident or require emergency surgery) I bruise a bit - knees and shins especially - but otherwise I have no problems at all with it.

in reply to PMRpro

This is interesting! tctmd.com/news/even-low-dos...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

What doesn't seem to covered in any detail apart from the comments below, is the other health issues that these patients also have, which may be contributing as much to the risk of CVD as steroids. plus of course, untreated inflammation can cause it's own problems.

"Lead investigator Mar Pujades-Rodriguez, PhD (University of Leeds, England) recommended that patients with inflammatory disease requiring oral glucocorticoids be treated with the minimal dose required while being closely monitored for cardiovascular risk. If a higher dose of steroid is required to treat a flare-up, she said the dose should be reduced as soon as possible, although the specific treatment course will be dependent on the patient’s needs. She noted that many patients in the CPRD - Clinical Practice Research Datalink - with inflammatory disease had modifiable risk factors, including one-quarter with obesity and another 25% with hypertension.

“Physicians need to keep this in mind, as well,” she said. “It’s not only a question of monitoring their inflammatory condition but [also] at the same time looking at whether there are other risk factors for cardiovascular disease, such as hypertension or diabetes or obesity. . . . Any of the traditional risk factors will need to be assessed and monitored accordingly as it will help reduce their risk.”

As in life generally, the risks of the steroids have to be weighed up against the risk of not taking the medication.

PMRpro profile image
PMRproAmbassador in reply to

Mmmm- but it doesn't seem to take into consideration that the underlying disorders are often associated with an increased rate of CVD, RA for example. And that is linked to the low level inflammation that is ongoing unless the disease is really well controlled. I think what it is emphasising is that patients should be monitored for everything - a really old-fashioned idea of looking at the patient as a whole, not just a case of RA.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

I think what it is emphasising is that patients should be monitored for everything - a really old-fashioned idea of looking at the patient as a whole, not just a case of RA.

Ooo..that’s a novel concept.....if only! 😉

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Indeed!

Stellamavis profile image
Stellamavis

I had fast pulpitations last night but it slowed as I took low breaths..I did wonder if it was because I elevate my legs on 2 pillows in bed to relieve my puffy ankles that feel like theyre being nibbled as there is a pinching feeling there most of the time in my left ankle even as I write this it’s there...later when palps subsided I lifted 1 leg again on pillow and felt a slow palp starting so put leg back down flat..palp didn’t start again so don’t know if this is AF I also had palps leading up to symptoms of CGA and tinnitus which I forgot about as it never occurred it could be yet another symptom leading to GCA which now is being dealt with and as I read the different Q+As about the symptoms on here of PMR/GCA and steroid use I recognise I have had a lot of them but never associated them with this disease as the steroids kept my pain at bay from the get go until recently but now with GCA in the mix and on a high dose 40mg for 4wks I realise that my head was buried in the sand of the more serious side of PMR and side effects of steroids so I’m absorbing every bit of info to wake me up and see I sat in a bubble of protection with the steroids keeping pain at bay until the headaches began and now I’m here learning more of this awful disease...I’m also taking aspirin so would that not help with palpitations if the blood is thinned ? Sorry I do tend to waffle on but knowledge now is key to me and my head is well and truly out of the sandpit..

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