PMR and fast heart beats

[24paula]

Hi all,

I was diagnosed with PMR some 6 weeks ago now, I was put on prednisone 20mg for 4 weeks, after the first week I was pain free it was great, I did suffer with constant fatigue, it got to the point I would have to sit for a while to recover, 2 weeks ago I saw my consultant and he said to reduce the pred to 2 weeks at 15mg then 2 weeks 10mg, since I have been on 15mg I have not felt well, I stated having fast heart beats, they did not last long but I was well aware of them, this morning I woke at 4.00am sweating and my heart was beating so fast, I could not lay in bed I had to sit up, it seemed easier, I finally got back sleep, when I woke I was the same, I have just tried to take things easy this morning, i’m so scared, I live on my own, I have made a appointment to see my consultant Monday, if I can put up with this till then!!!! Just wanted to know if anyone else suffers or has suffered with fast heart beats and is there anything I can do ?

[DorsetLady PMRGCAuk volunteer]

This gets discussed quite regularly, so there will be someone along with advice shortly.

Think your consultant has reduced with too big a step - 20mg -17,5mg-15mg-12.5mg-10mg much more sensible - and 2 weeks at each dose is not long enough, needs to be 4 weeks. That way you are sure current dose in enough to control symptoms before you reduce ….if not then you risk a flare.

Whether that has caused the fast heart beat I can’t say, but would say fatigue is the lesser of two evils.

[PMRpro Ambassador]

Next time it happens - call 999 straight away, especially since you are on your own. The paramedics carry an ECG machine and if you are lucky they will get a tracing of your heart while it's happening so they can work out what it is. That is quite important and seeing your doctor when it ISN'T happening means they can't diagnose it. I've been to hospital a few times - and here it doesn't take long - but by the time they got me there it had stopped! However - they had the tracings from the ambo so could see what it was.

Pred can cause palpitations and a lot of people our age have an arrythmia of some sort - your heart beats fast, slow, irregularly. I have atrial fibrillation and it is due to the autoimmunepart of PMR having damaged the electrical cells in the heart that govern the heart rate. We know that as the palpitations started about the same time as the PMR symptoms and that was long before I was taking pred. In fact, it is worse when I have a flare - the inflammation makes it worse.

Once they have diagnosed what sort it is, they can sort it out so the heart doesn't get too tired and make you more unwell and put you on medication to reduce the risk of the arrythmia happening. It is important to get a diagnosis as some sorts are more of a risk than others and the treatment may be different. You may get a heart monitor for a few days if it isn't happening all the time. Mine happen just for an hour or two at a time and by no means every day. Something that happened to me was a period of fast heart rate and then immediately followed by a slow period - if it goes very slow you can get quite dizzy and even faint. At the time it was just once every week or so and you could guarantee it wouldn't happen when the monitor was on!! They eventually found it when I was in hospital for something else - and sent me home with a pacemaker! That has sorted out that problem really well

[24paula in reply to PMRpro]

Thanks for that, you just feel so alone sometimes, I suppose I should have called them this morning, but I think after I had taken my meds I started slowly to feel a bit better, just got to get through till Monday when I see my consultant.

[PMRpro Ambassador in reply to 24paula]

Which one? Cardiology I hope - in my experience rheumies aren't very good at hearts

[jinasc in reply to 24paula]

If it starts again - do as PMRpro has said '999'. I had the same problem and my hairdresser walked into the house, picked up the phone and dialled '999'.

I tried to stop him as it had happened before...............so PMRpro is correct the para's came stuck me on a monitor, it had stopped before I got to the hospital - but the evidence was there - 24 hours in hospital then home. A/F then Arrthymia came along later.

PMRpro is not wrong about Rheumy's you need Cardio asap. So no reason to wait.

[Kendrew in reply to 24paula]

Hi 24paula,

I concur 100% with all the advice given already and this was the same advice everyone offered to me when I experienced similar.

I'd already had a history of palpitations that had come and gone throughout my life and each investigation had showed they were just ectopic beats, which although uncomfortable, were not serious.

I'd had a good few years without experiencing any episodes, but not long after beginning prednisolone they returned.

As advised, I went back to the cardiologist who did another set of comprehensive investigations.

I was given a small ECG device that was attached to my chest and I had to wear for two weeks. It picked up every hearbeat (normal and abnormal) and thankfully it showed I was experiencing ectopic heartbeats again. I was prescribed Propanolol and this has led to a marked improvement.

Prednisolone was definitely thought to have contributed to the re-emergence of the palpitations, along with other possible factors such as stress and anxiety as I tried to navigate my way through all the confusion of being newly diagnosed with an autoimmune disease!

Whenever a person experiences any abnormal or unusual symptoms, particularly where the heart is concerned, it's so important to get it checked out properly and not assume anything! It hopefully will prove to be nothing too serious as in my case, but in the event of it being something more serious then the sooner it's diagnosed the sooner it can be sorted.....and it usually can.

[winfong]

Definitely see your doc. At the same time, I've had tachycardia at several points in my life. There does seem to be a more benign version, which I apparently have. Of course, you may not, so definitely reach out to someone.

[LozzaSandstrom]

Hi there - I too was diagnosed around 10 weeks ago and my heart thuds especially in the night laying down. I went and had an ECG and blood pressure and all was fine so I think its a side effect of the steroids.I started on 15mg and down to 12.5 but pain in my upper arm has returned so I am doubting I actually have this - its a process of elimination I was told - if you test negative for the other things its maybe this - not sure that helps but get an ECG and blood pressure anyway for your own peace of mind

[PMRpro Ambassador in reply to LozzaSandstrom]

Mmmm - but were the tests done while it was happening?

"I am doubting I have this" - have what?

[LozzaSandstrom in reply to PMRpro]

The tests were done at a pre booked appointment time, obviously. This meaning PMR. This is all about PMR right?

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

It certainly is a PMR GCA forum, but we cover a lot of other things as well-add-ons to illnesses, side defects of drugs…..😊

[LozzaSandstrom in reply to DorsetLady]

Yes. I do know that.

[Ana-16]

Obviously take all the good advice. I also developed palpitations when I started on press. I’ve been on beta blockers since then and have been ok. Best wishes

[Pusph]

Hi, I am having the same problem. I have suffered from SVT Supra Ventricular Tachycardia for years and am on beta blockers statins etc. Since being diagnosed with PMR nearly 2 months ago and put on 15mg Prednisone my palpitations have become more frequent. I live on my own and it is very frightening, I can just be sitting in a chair and they just come on! I find that lying totally flat hopefully helps them to go more quickly, you can also try splashing your face with cold water and sucking an ice cube. I have asked for a referral back to the cardiologist as if this PMR can take 2 years ish to (hopefully) get on top off and I'm going to be on steroids for all that time I'm worried how much worse it could get! I'm already scared to go out much!

[24paula in reply to Pusph]

Hi Pusph

Yes that’s my problem I know I’m on theses now, how long will it take for me to come off and how much worse will it get, reading the posts it looks like the lower the dose the worst the side effects!!! I was awake again this morning but not as bad, I could cope I was just aware my heart was beating, I just hoped it did not get any worse and thankfully it didn’t, I have been o.k all day.

Yes that’s another issue you don’t want to go anywhere, my sister in law ask if I wanted to go to the garden centre and we could get a drink, but what if they start while I’m out I would hate that, and I would be driving, so unless I feel as good as I can at the moment I just stay home!!!

Take care!

[PMRpro Ambassador in reply to 24paula]

" it looks like the lower the dose the worst the side effects"

If you are talking about pred - no, not at all. Most of the side effects DO reduce with the dose but once skin thinning and bruising are established they tend not to improve.

[Pusph]

Exactly how I am. I absolutely feel as though my life has totally ground to a halt, I don't feel safe to go anywhere or do anything, now I'm finding that I'm getting palpitations pretty much after every time I eat! If it's not PMR causing pain it's palpitations making me feel totally unsafe!

[PMRpro Ambassador in reply to Pusph]

Be firm with your doctor and make it clear how much it is affecting your life.

I have atrial fibrillation, also a form of SVT, and while it has a habit of choosing really inconvenient moments to play up, it doesn't stop me doing things as badly as you seem to be suffering. It can be fairly well managed with medication - but I have a pacemaker so they CAN use enough medication without causing other problems like a very slow heart rate.

medicalnewstoday.com/articl...

webmd.com/heart-disease/atr...

Eating is a common trigger so it does pay to identify anything that is particularly bad - if I cut alcohol entirely it makes a bit of difference but not enough to compensate for the deprivation of a small glass of wine with dinner although I did give up G&T which I was enjoying during lockdown! ! But for some people it is a major trigger.

Here it is common to use magnesium supplements to reduce episodes - when I was in hospital and the alarm went off a nurse would appear quite quickly with a little bottle of magnesium picolate to drink and I do find that if I take it as an episode is starting it will abort it more often than not.

[Pusph in reply to PMRpro]

I cut out all alcohol, caffeine, chocolate etc years ago. Eating anything seems to be a trigger at the moment. Asked for referral back to cardiologist who I haven't been to for years to see what they suggest!🤞

[PMRpro Ambassador in reply to Pusph]

Oh how boring! I just remembered this paper:

ncbi.nlm.nih.gov/pmc/articl...

Of course they have the usual get-out "Given the variations in the trigger and type of the arrhythmias, we suspect that the cause may differ in individual cases."

Think I'd be asking for an emergency referral - you can't carry on like this,