heart rate

[Joseph14612]

Anyone ever wake up with a racing heartbeat? I am on Actemra and 35 mg prednisone...for PMR and GCA....heart rate staying high after 5 hours.....anywhere from 75-over 100 at rest.

[SheffieldJane]

Yes Joseph. I can’t even remember when and why, after 7 years. You need to consult your doctor. My symptoms never seemed to amount to anything. Best wishes. Xx

[Joseph14612 in reply to SheffieldJane]

Hopefully mine won't either...thanks

[winfong in reply to SheffieldJane]

Same here. Very alarming, had to see a cardiologist, wear a halter, etc. Turned out to be totally benign. Haven't had any problems since,

[PMRpro Ambassador]

Yes - I have atrial fibrillation which the cardiologist is confident is due to the autoimmune part of PMR having damaged the sinus node, the electrical cells that govern your heart rate. A/F is also irregular, not just fast. It needs to be checked out by a doctor and properly identified. It just being slight tachycardia is one thing, a normal heart rate is taken as 60-100 so being up to 100 doesn't usually exercise them but if it is spiking much higher (mine is often briefly up to 140 but falls again) they do start to take notice and more so if it is irregular, Pred, especially high doses can also be a cause. Mine has been really well controlled and seemed better after starting Actemra - it has always been worse if the PMR is worse. However - the bivalent Covid booster has poked it into life and it has been a pain since.

What does become a concern - and why it needs to be checked out - is if it is one of the irregular versions or if it goes very fast - above 150. Then it is OK to call the emergency services or go to the ED. Irregular heart beats can disturb clots in the base of the heart and send them off into the circulation and that puts you at risk of stroke or heart attack. I am on anticoagulant therapy to reduce that risk,

[Joseph14612 in reply to PMRpro]

I also am taking Plavix for stents from 10 years ago...it's an anticoagulant as well. Today my heart rate is between 80-100....but at time drops in the 70's.....normally in the morning it's around 63 but sitting here typing, it's 86... Everyone is closed today, but if it's the same tomorrow, I will call doctor....thank you..

[PMRpro Ambassador in reply to Joseph14612]

Mine normally resting is 60, this afternoon its been running at 100-110 a lot of the time but with spikes up to over 130, I know what it is, it is an absolute pest, but because I know what it is, I'm less worried. But you need to be sure. If it really bothers you, call emergency services. Not so sure how it works in the USA, but in the UK an ambulance carries a 12 lead ECG device and they get the evidence more quickly than going to the ER. Which can be handy given on 2 occasions by the time I got to the ER it had settled down. But they had the evidence!

[discoballs in reply to PMRpro]

Not so sure how it works in the USA? In the main a fire truck shows up first. No kidding

[PMRpro Ambassador in reply to discoballs]

I know but they also have paramedic training and carrying and using a 3-lead ECG pack isn't difficult these days

[SheffieldJane in reply to Joseph14612]

My father in law was taught self hypnosis by his doctor. He was able to settle his own heart. He lived a full life until he was in his late 90’s. X

[Joseph14612 in reply to SheffieldJane]

Wow! So cool!

[SheffieldJane in reply to Joseph14612]

He was really cool.

[chriss48 in reply to PMRpro]

Just been in hospital for a week and couldn't access this site, just knew I would get the information I needed. I had an infected haematoma on my leg, had AF on admission then in theatre went into AF with RVR (I've looked this up so know it's not the best). However they got my heart rate stable. I'm under the care of the plastic surgeons as the wound is very deep. A medical doctor came to see me, told me I would need blood thinning medication but this couldn't be started until the wound had healed and this will take ages. So reading about the ways you manage AF has been really helpful, I feel very anxious about it all. How do you all measure your heart rate at home? Any help or advice much appreciated.

[PMRpro Ambassador in reply to chriss48]

I have a pulse oximeter - the little clip that fits on your finger and measures heart rate. I don't make a big thing about it though - I go just as much by how I feel. If you want more replies you would be better posting as a separate new thread - only a few of us will see this here.

[chriss48 in reply to PMRpro]

Thanks for your reply, I will get one of those I think that will provide some reassurance, I don't want to make a big thing about it either, so won't post a new thread, but thanks very much for your help. There was some discussion between the various docs about putting my pred up, even as high as 60 mgs, but in the event stayed at 7mgs, I didn't feel informed enough to contribute to the debate but judging from the comments in this thread that was the right decision. Thanks again, hope you have a good day.

[PMRpro Ambassador in reply to chriss48]

Blowed if I can understand why 60mg was considered - 20mg is the maximum under sick day rules and which might have been appropriate since I assume you needed lots of abx.

The bivalent booster Covid jab really kicked my a/f into life - and I did raise my pred back to 10mg from 7mg which worked to some extent to calm things down. My a/f has always been associated with the inflammation in PMR, it was the PMR autoimmune disorder that caused it in the first place. It does all seem to be under control now - though I had a return of symptoms after a rather powerful cup of coffee last week! Never had it trigger the a/f before. Hope so - it's been most unpleasant!

[chriss48 in reply to PMRpro]

Thank you, and thank goodness I didn't get given the 60mg. I've ordered a pulse oximeter and appointment for echocardiogram has just come through so will see what that shows. Feel a bit more informed now thanks again.

[PMRpro Ambassador in reply to chriss48]

Of course the ECG is only as good as the time it is done - it probably won't show anything useful unless it happens while you have the thing attached! Bit surprised they didn't start heparin injections though - they are used post-surgery anyway here.

[chriss48 in reply to PMRpro]

I think the risk of causing a bleed would have outweighed the benefits of starting any anticoagulation therapy, it's a big open wound in my leg they can't start closing until they sure all infection gone. I did the injury with my walking stick as well which doesn't seem fair! I was pretty stable post op.Thanks for your point about the echocardiogram, at least with the pulse oximeter I can flag up any concerns. Whether I've had the AF for some time or not I don't know, not aware of palpitations etc, I was stressed to the max though, it was my mother's funeral on the Wednesday to which I only just managed to get there I could hardly walk and next day I was in hospital.

So maybe all that just put me over the edge, feel 100% more relaxed.

Might try a. 25 mg reduction in the pred.

[PMRpro Ambassador in reply to chriss48]

I think that is likely - I had a bad tachycardia event the weekend before my husband died, a heart rate of 190 requiring being blue-lighted to the local hospital, We'd had a bad experience with the on-call GP who refused to come when requested and as the local resident, I'd been frontline contact. I was exhausted. The conclusion from the sensible doctors was that that was the trigger - one at the hospital told me I should avoid stress!! Silly woman, she was aware of the situation. Most of the time the rate of a/f is very low - but a couple of exceptional circumstances caused episodes.

[chriss48 in reply to PMRpro]

What an awful experience for you, not surprised it caused your body to go haywire.I'm concentrating on keeping stress levels down, making sure plenty of rest and mindful activities.

Hapy New Year to you,

[Broseley]

I sometimes wake in the night with my heart racing. I take deep breaths and it soon settles down. Rather strangely, it is never recorded on my fitbit, which monitors my heartbeat in my sleep.

[Joseph14612]

Intersting, thank you

[sequeluk]

Hi Joseeh, I have had a similar reaction and put it down to the high dose of prednisolone but did get it all checked out by having both a 24-hour monitor and a 6-day monitor and then an echocardiogram. No abnormalities were detected in my heart and it was diagnosed as paroxysmal atrial fibrillation. I went on to a beta-blocker when the high heart rates first started and this was very effective at keeping the episodes and length of time of each episode to a minimum. As I reduced the prednisolone the episodes subsided and now been on zero pred for over 2 months and also stopped the beta blocker a month or so ago. Also taking Actemra for the GCA. Definitely get it checked out but hopefully yours will be similar and improve over time. Best wishes.

[PMRpro Ambassador in reply to sequeluk]

I hope you were also put on an anticoagulant - that is the most important thing with atrial fibrillation, especially the paroxysmal type.

[Joseph14612 in reply to PMRpro]

I take Plavix....10 years now...

[PMRpro Ambassador in reply to Joseph14612]

Here it isn't considered adequate for the type of clots caused by a.fib, it needs at least warfarin or better one of the new generation anticoagulants. But you seem to have done OK so far.

[sequeluk in reply to PMRpro]

Yes, I’m now on Riveroxaban but thanks for the check.

[Joseph14612]

Thank you, so glad you came through it safely....

[emmamom]

I did when I was on that level of prednisone (I am also on Actemra), but it went away when I got to lower doses. I would have it checked out though. Good luck!