Had a pretty scary evening yesterday when I had 2 hours of intermittent rapid heartbeat top rate was 151. In between my rate never went below 80 at rest and my normal at rest these days is 60. Was dizzy, short of breath, and also had some chest pressure at the time. Cardiac background is I had an angiogram and two stents in Ovct 2020. Have been intermently breathless since when I raise my fight arm above my face, or bend down low. Nobody knows what that means, but I have only had phone consultations. Could do an ECG on my Apple Watch and it showed atrial fibrillation. Along with my other symptoms I was advised to get to A and E, which I did.. ECG showed slight change. Traponin was a bit raised. As I was due to have an echocardiogram today anyway it was decided to see how that panned out.
Of course I’ve been looking up everything that moves, causes, reasons etc, but NOTHING about vasculiis or PMR or auto immune disease has showed up at all. And yet I remember distinctly PMRPRO mentioning she gets AF as part of her auto immune picture. Might it be part of mine? Or could it be something vascularised ish? Does anyone have any advice please? I had a torrid time with a local rheumatologist five years ago, and have been more or less managing myself since then, due to lack of GP interest. . If I should raise the PMR as a possible link with AF and got referred to the hospital rheumatology dept, does anyone have any experience at St George’s Hospital Tooting please? Tbh, if there was any problem I would go to see Rod Hughes at Chertsey privately.
I would be grateful for any advice, personal experience of anything similar.
Thanks!
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Mary63
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I think we get a skewed version of things on the forum. There are many people who have a relatively easy path through PMR. A friend of mine was off pred in one year and has had no recurrence in five years. Two other friends have had an easy ride and have not used the forum. We only hear of problems on the forum!
I've written about the same posts, Mary. So, I don't have answers; I only have questions as well as you do. Sometimes as I read the posts of so many on this incredible forum, I'm beginning to believe I'm still learning about the ramifications of having an autoimmune disease. I've recently been in the hospital with what appeared to be heart issues and am due for another test this week, a cardiac MRI.
I was diagnosed with GCA in August of 2019 and am presently taking 13 mg of Prednisone plus weekly injections of Actemra. There is one area of the heart they are taking a deeper look at where the amount of blood flow is questioned, but I just have a feeling that it won't result in..." we can fix that and your quality of life will improve." My heart rate is generally low (I was diagnosed with bradycardia), but when I move about to any degree, it is over 100 and I become a close relation to a dish rag!!
The cardiologist I had put me on 3 meds plus aspirin, then took me off 2 of them. My interest put me back on one and took away the aspirin. The isosorbide he put me back on did help some with the breathing. I truly can share this walk with you and wish you all the best. Hopefully, there will be answers soon. In the meantime...we all have the forum, thank heaven.💖
I don't know anything about rheumatology at St George's but my family's experience of the Cardiac Dept is good. We have discovered a genetic weakness in 2 daughters and a granddaughter, and the testing, investigation of all family members, follow up and constant checkups have been exemplary. Hopefully they will be as thorough with you too. Keep us posted. Good luck.
That is good to hear. My experience with St G’s cardiology has been so so. Probably affected by not being able to be seen in person in the last few months. Hopefully now I will be dealt with well!
Sorry cannot offer advice, other than to say my hubby suffered coronary issues so I do have an understanding of how upsetting it can be be - albeit from a spouse’s view if not a patient’s.
Do hope you get things resolved soonest and sending virtual hug 🌸
I had my first cardiac episodes Unstable angina dealt with by angiogram and stenting) in October 2020 after nearly 5 years of prednisolone. No other risk factors. I did wonder at the time about the connection between CVD, pred or inflammation. Doctors did not want to discuss it. My concern now is whether anyone wants to change the management of PMR. I have effectively been on my own, and don’t want interference! Thanks for your reply.
Hi Mary, I have been on preds for 5+ years now. I had to have several cardio versions and a cardio ablation for A-fib which according to my cardiologist was most likely caused by the Prednisolon. Still have a irregular heartbeat, but that is most likely not worrisome . I never had high b.p. Or heartproblems before the prednisolon. I hope you feel better soon!
In my case the Big Cheese cardiologist thinks the autoimmune part of PMR damaged the sinus node cells so they aren't firing properly. It is definitely worse during a flare and the local cardiologist accepts that and accepts that I need a higher dose of pred to keep the a/f under better control. Luckily the rheumy doesn't argue too much!! Unfortunately, I realised G&T makes it worse though wine doesn't have as much effect. It is paroxysysmal - episodes at irregular intervals. Mostly a couple of hours, sometimes 3 or 4, but almost never longer. With medication the tachycardia is up to 130 or so - the first one was 5 hours of up to 230 which was interesting, There wasn't a free ICU bed - I was in hospital anyway - I was surprised they didn't shock me but they don't seem to go in for cardioversion here unless they must and not cardioablation as they say it doesn't work for long enough!
When they investigate they should identify the most likely cause and deal wit that - though the UK does seem to have a more aggressive way of dealing with a/f when you have an episode! What is most important though is to be put on anticoagulant therapy to reduce the risk of clots forming and then being dislodged from the bottom of the ventricles during an episode. Not sure how consistent they are in the UK - but it is important. My husband has almost permanent a/f but he doesn't feel it, I notice when mine starts but rarely bother going to hospital - it has usually stopped by the time I get there! It makes me feel quite ropey if I have to actively do anything - like cook dinner and it habitually appears about then! Even more often around midnight and it stops me sleeping. I have small packs of liquid magnesium - if I take one as soon as I feel the first irregular beats it often aborts, At least as far as I can tell - but maybe it wasn't going to turn into a real episode anyway, but that is what the hospital uses first line and recommended.
Mine is definitely NOT due to steroids - they make it less of a problem. People DO develop palpitations when on pred, mostly as a result of tachycardia, but the underlying causes may vary and a/f does become more common as we age anyway. It was already present, it started about the same time as the PMR and as you all know, I had it for 5 years without pred, so I am perhaps more aware than a lot of people of what PMR can do that is similar to what pred is claimed to do. The final major episode that led to it being diagnosed was due to i.v. diazepam, repeated the next night - and once since when I was admitted to hospital with a head injury after a fall due to a bradycardia episode, no-one looked at my notes first and my husband was still on his way to the hospital. The first time resulted in the comprehensive diagnosis and the last in a pacemaker - 7 seconds without a heart beat really isn't a good look! The p/m doesn't stop the a/f but it does stop the bradys.
St George's Tooting has had pretty good PR in the past with their 24 hours in A&E programme, although it does tend to concentrate of A&E for obvious reasons there are a lot of arrythmia related cases and they do seem to keep people in to investigate. There is little communication between the rheumy and the cardiologist here - really doesn't make much difference once the cardiology diagnosis is made.
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