PMR and afib

[Hopeful424]

Amy of you with PMR also have afib? Probably caused by either the PMR or the pred!! Anyone had the Watchman implant? Any issues if you have? Concerns me a little, going into my heart which is sound physically, but the electrical part is giving trouble. Don't like Eliquis either! I am having trouble committing to the procedure. Thoughts?

[PMRpro Ambassador]

This is what I just replied over on the other thread where you mentioned this:

The studies I have seen suggest that you don't get off anticoagulation entirely with the Watchman - it requires antiplatelet medication, usually aspirin. I'm not sure I'd consider that significantly better than the DOAC you are on and the procedure itself involves risks as a surgical procedure which includes stroke during the procedure and cardiac tamponade.

I also have a/fib triggered by the PMR - definitely not the pred as it was there from soon after the PMR symptoms started (though I didn't realise at the time) and the cardiologist is quite satisfied it was due to the autoimmune part of PMR damaging the electrical cells that form the sinus node in the heart. I have had an ablation after the a/fib got much worse after a covid jab 2 years ago - but am still on a DOAC (Pradaxa) which I have had no problems with at all. The person who worries most is the anaesthetist at the Pain Clinic who refuses to give me steroid injections "in case you bleed" - luckily my rheumatologist is prepared to do them and currently I am pain-free for the first time for years after some steroid injections!!! ANd I have never even bruised slightly!

[oaktree5 in reply to PMRpro]

would you be aware of any studies connecting PMR with sinus node disturbance. I recently dx. w/Afib and put on eliquis. Also have dx of POTS now. Dx of PMR was in early 2020, came on two weeks after i got first covid jab. My internist and card think the timing of PMR and Afib/POTS just coincidence. I believe there is a causal connection but have not found studies to support. When time perpermits appreciated

[PMRpro Ambassador in reply to oaktree5]

There is a study showing a/fib is more common in patients with a few rheumatological disorders - including PMR which is quite high on the list, only coming after vasculitis which, arguably, PMR is anyway. Thr increased rate was long acknowledged for RA but in fact, PMR seems worse.

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

In my opinion there is far too much tendency to blame any palpitations on pred as that is listed as a side effect and dismissed by GPs.

As I have said, within 3 hours, the bivalent Covid jab 2 years ago had triggered worse episodes of afib than I had had since diagnosis almost 10 years earlier, normally they were never more than a couple of hours max and maybe once a week or less, well managed with medication. The duration increased daily until after a month or two they were up to 12 hours and most days, making daily living very difficult, especially as I live alone. I couldn't even stand long enough to prepare meals! In retrospect I should have pestered the local ED more, might have been sorted out quicker! But I knew there was little to be done, the heart rate was rarely concerningly high and the doctors I spoke to were fairly laid back too. In the end I saw an electrophysiologist who disagreed about the Covid jab but did offer ablation which I eventually had a year after it had got worse and that has cured it. The e-physiologist who actually did the procedure agrees with me about the Covid jab - there has been a German study showing that the myocarditis known about in young men also occurs in older females, not sure about older males. Of course - anything from a non-native English-speaking country tends to be ignored in the USA, as patients on here have been told, though actually, the comment was that it was anything from outside the USA!

The longer I have PMR and am involved in this lot - the less I believe in coincidence. And even it if IS coincidence, you can't prove it and dealing with the problems as an holistic problem, the better it is for the patient! After 4 very unpleasant years medically, sorting the afib and 3 steroid injections for apparently different non-PMR problems have resulted in several amazing improvements in pain and other symptoms. I had had swollen ankles, not dreadful but variable, and there was a push I should wear compression stockings, blaming venous incompetent. Not going to happen, mainly because I can't get the damn things on and off - off worse than on since I live alone! - but from March to November they are simply too hot, even ankle socks can be too much. Since the ablation - no swollen ankles. Who'd have thought, poor cardiac performance causes swollen ankles? After the last 2 steroid injections - I feel at least 5 and probably 10 years younger, apart from slight aging effect. The clinical picture is definitely back 10 years!

[Bluey-1 in reply to PMRpro]

‘the less I believe in coincidence’.

The electrophysiologist who did my ablation commented that if two things happen medically around the same time there’s usually a connection. Like you I suffered for a long time before getting to an ablation which I had done privately after a long unhelpful tale with the NHS. I’m now heading for month 3 after it and things are much improved, although I’ve had three 10-15 hr episodes since coming off the beta blockers post 6 weeks after the procedure. Back in the NHS system for follow up with a week’s heart monitor early December. It is so much better, can’t believe how wonderful life is in sinus rhythm but I don’t feel out of the woods yet. I had atrial flutter and atrial fibrillation.

[PMRpro Ambassador in reply to Bluey-1]

Absolutely - and mine is obviously out of the same stable!! I had the afib - until I had a bisphosphonate infusion which triggered atrial tachycardia as a new diagnosis!!! I'm still on the bisoprolol for that but with permission to play with it. I upped it for a while - she had said go up to 10mg/day but at 7.5mg it was horrible enough! Now back to the old dose of 1,25mg am and 2,5mg evenings, I might try another fiddle with it. I'd dreamt of less tablets but that isn't going to happen - except painkillers are out of the equation at last, for now at least! I'll take the tablets and feeling more like I did at 62 than I have for the last 5 years!!!

Things here are nothing like as bad as the NHS yet so trying to work out how to get the best of both worlds if I did come back to the UK parttime.

[Bluey-1 in reply to PMRpro]

As usual PMRpro, a helpful reassuring response. I was beginning to think the ablation had failed and I’d have to have another at great cost and stress. If the Sotalol keeps my heart in better rhythm I’m happy to keep taking the pills. Heart monitor (and watch ) showed I was in symptomatic Afib for well over 50+ of the time - felt dreadful. It’s been life changing since. Weirdly my CRP markers rose up to 52 over the summer with no GCA symptoms. However my rheumatologist increased pred to 10 mg (from 2.5mg - when I did have AI) and I’m slowly tapering down again. Disappointing but I can only deal with one thing at a time. Its been a tough summer and autumn on the health front

[PMRpro Ambassador in reply to Bluey-1]

CRP can also be related to cardiac things. It really isn't exclusive to rheumatology! I don't really care too much what I take or how much - as long as I feel reasonably good on it!!

[Bluey-1 in reply to PMRpro]

I wondered that re CRP. I agree with you if the tablets work I’ll take them!

[Hopeful424 in reply to PMRpro]

This is great. As I have been advised, I do not take any vaccines now, certainly not the Covid vaccine. What steroid injections did you have? I am very sensitive to meds so my rheumie is hesitant to use a biologic in my case.

[PMRpro Ambassador in reply to Hopeful424]

Just normal local steroid shots - depot medrone but not deep i.m. I've had no problems with Actemra - and it has got me from 19 to 7mg pred

[oscarina in reply to PMRpro]

many thanks for your thoroughness of reply to my inquiry, yes to swollen ankles and now forearm and exhaustive fatigue throughout the day that I push through or else I wouldnt have dahlias and vegetable gardens that keep me moving along with the westie who requires her walks daily. Your information is always much appreciated.

[Karenjaninaz in reply to PMRpro]

For anesthetists, steroid shots into the epidural space on anticoagulated patients, is contraindicated. If bleeding occurs you can end up with nerve compression, paralysis and pain. It’s bad enough having skin bleeds.

[PMRpro Ambassador in reply to Karenjaninaz]

Yeah, I know - but these steroid shots weren't into the epidural space! And really - she wasn't offering ANYTHING that worked, it was no to everything that did work at all. My rheumy has been the only one who has really done anything useful.

The face looking back at me from the mirror is a different person to last Sunday.

[Karenjaninaz in reply to PMRpro]

Then that other person is not the right one obviously. So glad it worked for you and you got results.

[Hopeful424 in reply to PMRpro]

Thank you! So glad you are pain free. My CRP went from.77 in January to 1.85 a few days ago. Apparently I am having a flair and going into a surgery at this point does not appear wise.

We will see!

[papadapadoo]

I was diagnosed with PMR in December 2022. A year later a sleep study revealed afib, which is termed "permanent" but has no symptoms to date. I believe I did not have afib prior to 2022.

[Karenjaninaz in reply to papadapadoo]

Afib can lead to a surprise stroke. It is a progressive disease. The heart is not beating efficiently and you can have fatigue, and shortness of breath as well.

The current thinking is to ablate afib early on to prevent it from becoming permanent reducing stroke risk.

I had the new pulse field ablation last April at age 81 This new procedure is shorter than the old techniques. I am doing well.

[Bluey-1 in reply to Karenjaninaz]

Yes, I am one of the unfortunates whose Afib was only discovered after the TIA. I was given blood thinners and beta blockers and sent on my way. I did see the GP a few weeks afterwards as I had a high resting HR. Told to double the Bisoprolal. Ten months later and increasing breathlessness, armed with my Smartwatch indicating I was in Afib 50%+ weekly I saw the GP in the practice that had taken over the old one. Blood tests indicated problems and referred to Cardiology. I’ll stop the long tale there as I ended up having an ablation privately.

[PMRpro Ambassador in reply to Bluey-1]

Sounds like you were caught in the NHS maelstrom. I was lucky in that I happened to be in hospital when it was diagnosed - in for something else and I reacted to the i,v, diazepam. So I was kept until they worked out what it was and settled on treatment. Then a few years later I had another problem, was taken to the ED and given i,v, diazepam and bang, more afib PLUS I was having bradycardias with 7 second pauses which was why I'd collapsed! So kept until they'd given me a pacemaker. Wasn't so lucky with the ablation, had to join the queue, 3-4 months he said, then I got a date after 7 months but the doctors here had their only one day strike that day and I had to wait another month! I didn't mind too much - they were justified.

[Bluey-1 in reply to PMRpro]

It’s quite the struggle managing your own health and quite the lottery. Lesson learnt re the TIA - go by ambulance! I think you’re taken more seriously. We live 15 minutes from a major hospital. It was quicker for my hubby to drive me there. I know of other cardiac cases where arriving by ambo meant they were dealt with immediately and not put on a waiting list. God, it’s hard work!

[PMRpro Ambassador in reply to Bluey-1]

I don't know whether you are taken more seriously or not - I suppose if the paramedics present the findings on scene you might, depends on who is on first assessment doing triage. Though you SHOULD call 999 - unless you have someone to take you. Don't drive yourself, you might have a stroke! Same with GCA visual symptoms. Cardiac cases by ambo ALWAYS come with an ECG and it does mean they are more likely to catch a record of the arrythmia at the time.

[Karendeena]

I had both and they appeared virtually at the same time in 2020. I successfully came off prednisolone in January 2024 after 3 years, I am told I am in remission even though I get aches and pains, must be old age!! I had an ablation in March this year for the A as the medication wasn't working and I was having symptomatic episodes for up to 36 hours. The ablation appears to have been successful so far 🤞