GCA and heart palpitations : Hello good people I... - PMRGCAuk

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GCA and heart palpitations

WHL67 profile image
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Hello good people I Started on 60mg pred back in August currently tapering down at 35mg, now noticing I’m getting heart palpitations the last week which seem to be lasting hours on end. Have had an ECG and my GP now wants to put me on beta blockers.

just wondering have any of you good people on here experienced this. Thought I’d ask the experts first before speaking to my GP !!

Many thanks.

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WHL67
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PMRpro profile image
PMRproAmbassador

My palpitations started about the same time as the first signs of PMR but weren't long lasting - and weren't due to pred which is what many doctors will allege, I wasn't on pred for another 5 years! They improved once I was on pred, less often at least. Some years ago I had a bad drug reaction that caused a long and severe episode of atrial fibrillation which meant i was kept in hospital for diagnosis and management. The cardiologist then was confident that the a/f was due to damage to the sinus node in the heart (the electrical cells that govern the heart rate etc) as a result of the autoimmune part of PMR. Since then, although it has been well managed with medication, any time I was threatening a flare it was worse and part of the reason I needed the pred dose I did was to keep the a/f happy. Since I have been on Actemra it has made a great difference - the episodes are fewer, less severe and shorter.

Have they identified a type of arrythmia causing the palpitation? A one-off ECG is only any use if you have an episode while it is being done - and I don't that has ever happened to me, only on the extended sort and sometimes even 24 hour ones showed nothing!

WHL67 profile image
WHL67 in reply to PMRpro

thanks PMRpro this Actemra keeps appearing in peoples’ comments, what is it for?

PMRpro profile image
PMRproAmbassador in reply to WHL67

Tocilizumab - a biologic drug that interferes with the process of producing IL-6, the cytokine that causes most of the inflammation in GCA and PMR. It is only approved for GCA and in the UK is restricted to a year in patients who have relapsed repeatedly and can't get off pred. It has been used in RA for some years - so don't get me started on why they get it and we don't!!! I don't live in the UK and my rheumy arranged for me to have it. I'm down below 10mg pred for the first time in 7 years having been on pred for 13 years altogether. for the last 3 years at above 15mg.

DeepThought2 profile image
DeepThought2

Dear WHL 67 - I had palpitations a few years before disease onset but they disappeared again after a few months. When GCA (I have the large vessel version of GCA) started, palpitations where none of the symptoms though resting heart rate strongly increased. I had palpitations again during pred tapering but they also disappeared again once I was below approx 15 mg. (I saw both times a cardiologist, but there was nothing serious). So looks palpitations could be both, sign of the disease (see PMRpro's post) but also occur during pred tapering. I don't take pred anymore (but still Actemra) and have no palpitations since.

WHL67 profile image
WHL67 in reply to DeepThought2

Thanks for sharing !!

winfong profile image
winfong

I had these something terrible after first diagnosis and treatment. Went to a cardiologist, wore a halter multiple times, but nothing really came of it and they eventually went away.

BTW, palpitations are not that uncommon, and are typically fairly benign. Hard to believe, I know, as they can be very scary.

PMRpro profile image
PMRproAmbassador in reply to winfong

Ah yes - but if the palpitations are being caused by (for example) paroxysmal a/f or another similar arrythmia, the palpitations themselves may be fairly benign, but their effects may not. a/fib is a major cause of stroke as it disturbed clots in the base of the ventricles and send them off on a journey around the circulation. Depending on which set of capillaries they end up in you may have a pulmonary embolisms, heart attack or stroke. The most important medication for a/fib is an anticoagulant to prevent the clots in the first place .

Broseley profile image
Broseley

I have a long history of palpitations. I've had them on and off since I was in my late teens. GP says they're nothing to worry about but after wearing a Holter for a week aged 55 they found 2 seconds of "suspected atrial fibrillation". So I was put on blood thinners and betablockers. But I still got palpitations, and yes, being on 40mg pred did make them worse, , especially in the evenings,but as I tapered down they stopped.

Incidentally, after a really bad bout in 2012 of virtually constant palpitations for 6 months, I did some research and found a paper that links it to the vagus nerve and your digestive system. It recommends taking probiotics, magnesium and ginger. I did this and it works! Now I take magnesium daily but if I get palpitations I take ginger (capsules from Holland and Barrett). They make you burp for a while, but work to stop the palpitations.

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