GCA now TIA, irregular heartbeat

[Bluey-1]

Early August I was diagnosed with a ‘left front ischaemic stroke secondary to new atrial fibrillation…heartbeat irregularly irregular’. It was quite scary as I lost language and ability to order numbers for a short time. Hot foot to A & E, cue ECG, bloods, MRI.

Cholesterol 8.0. Prescribed Edoxaban, Bisoprolal and Atvostatin. Don’t want to speak too soon but feel much better on treatment. Steroid tapering going well so far although it’s been halted while I get used to new meds, re-do bloods and have a holiday later in September. Doctor seen in TIA clinic thinks I may have had the irregular heartbeat a while. I have felt strange sensations with a high resting heart rate at times as noted by my smartwatch. Any ideas? Is this due to age, linked to GCA, steroids, bad luck? I eat a good diet, keep fit, balancing stresses better. It never ends. Definitely need to upgrade my dosage box now, so many tablets.

[DorsetLady PMRGCAuk volunteer]

Good news that you are feeling better -long may it continue. 🌸

[PMRpro Ambassador]

My atrial fibrillation was almost certainly caused by damage to the sinus node caused by the autoimmune part of PMR. The palpitation symptoms first appeared about the same time as the PMR symptoms did. PMR wasn't diagnosed for 5 years and it was another couple of years before the a/f was found. There is research that has identified that the incidence of a/f is higher in patients with RA and with PMR. I had asked a top PMR rheumy is that was the case but at the time she dismissed it as "difficult to say as it is the same age group".

I have posted quite a bit about a/f in the past - anyone who experience any symptoms that could be palpitations needs to get the GP to take it seriously, a simple ECG is useless unless it was done during an episode and it almost never is, A better way - and what my GP in the UK said I should do - is to dial 999 if it goes on a bit but whether they would arrive in time to get an ECG these days is another matter! I didn't and I know now I should have. But it needs a longer term monitor, at least 24 hours and repeated if you don't have an episode.

Bcol posted recently about using a Smartwatch as a monitor - lot of interest. Now you have posted you will see a load of Related Posts.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

I know what you mean about tablets! I had a period where I had tablets to take 5x a day - I had to put 2 together and set alarms for the various times! The antiarrythmic I was on and the anticoagulant should not be taken together as the anticoag level in the blood just goes up and up if they are so they must be spaced 2 hours apart, We discovered that when OH had an anticoag level 10x what it should have been and came close to bleeding to death, It was a great relief recently when the cardiologist switched the antiarrythmic from one 3x daily to a 1x daily one. This is until I get an appointment for an ablation. The bivalent Covid jab triggered longer and much more severe episodes last November (my opinion as it happened a couple of hours after getting it, the cardio says the old medication had stopped working).

[Bluey-1 in reply to PMRpro]

Thanks for a quick response. I hoped you’d come up trumps. Had an ECG in A & E plus another at the TIA clinic. Both showed erratic heartbeats. Interesting about tablet timings… so the Bisoprolal and and Edoxaban need to be taken two hours apart? I have a phone alert set to take tablets at different times. It’ll be buzzing all day at this rate. I’ll follow up the related posts on smartwatch for trackers. Many thanks

[PMRpro Ambassador in reply to Bluey-1]

No, depends on the drug and they are OK together I think, it was specific cardiac drugs. I take bisoprolol and the anticoag together. It wasn't helped by my anticoag being a 2x daily one!

[Bluey-1 in reply to PMRpro]

Annoying for you. Fortunately the Edoxaban is once daily. The Atvorstatin is like a horse pill - 80mg. Apparent shortages until spring of 20mg/80mg so have been prescribed x 2 of 40mg.

[PMRpro Ambassador in reply to Bluey-1]

Actually I chose it - at the time it was the only one with an antidote! Plus, with 2x daily it would be out of the system faster if push came to shove ...

[Hulotsholiday]

I was diagnosed with Af a couple of weeks ago but I don’t believe it’s directly related to PMR as I was having ( infrequent once every year or so) episodes of irregular heartbeat fir some years before PMR. But recently the episodes have become longer and worse. I was put on anticoagulant for life and a wait and see approach to the AF for six months.

I have an Apple Watch Series 6 which monitors heart rate and oxygen sats. Both are correct. I can also use it to take a basic ecg. When I saw the cardio consultant he said he needed an ecg during an episode and could I get myself to hospital next time. I said it wasn’t easy; distance etc plus the episode may well be over by the time I got there. I said the last episode lasted over 5 hours, it was the middle of the night and I took an ecg on my watch at three points during the episode. He was delighted and asked if I had the data. I showed him my phone which had the ecgs, plus beat to beat rates (all highly erratic) and heart rate. He took one look and said that’s AF.

I understand there are reservations about such technology, not least the expense and reliability. But my GP and the consultant are content to work with the data and it’s saved me having to await an implant monitor before treatment. Data can be exported by pdf if required and consultant is going to use any relevant info at the follow up appointment in 6 months to decide whether the AF has to be treated by tablet or ablation.

It’s not complicated to use. I bought it for the tracking and fall monitoring function…I fell at an isolated spot, dislocated my thumb, cracked a rib plus cuts and bruises and struggled to get back to my car. The watch knows if you fall and can call emergency services if you don’t respond. I hadn’t realised the benefits of heart monitoring and wouldn’t be without it now.

[PMRpro Ambassador in reply to Hulotsholiday]

At one point I remember seeing that the NHS was considering supplying patients with something of the sort as a screening tool - the recording doesn't have to be fantastic but anyone who can show one that COULD be an identifiable arrythmia would then be provided with a medical device, Some of them are good enough in their own right and far cheaper than the external loop multi-day devices for a cash-strapped NHS.

[Hulotsholiday in reply to PMRpro]

I read an article a couple of weeks ago which says NHS is issuing 100,000 home kits…with smartphone etc to home monitor COPD and heart failure patients remotely. I’m sure this tech will become routine fairly quickly as the reliability has improved considerably and the data gathering is amazing. And non invasive.

Edit to add: initially I thought it was all a bit of a gimmick, but I’ve changed my view. I think the branded versions…Apple, Samsung, Garmin are first rate but I’d be wary of the cheap smartwatches. I’ve tested quite a few and they’re not consistent.

[Bluey-1 in reply to Hulotsholiday]

I agree the data gathering is very good and I wish I had pressed the info on my doctors more. The guy at the TIA clinic did ask me about the heart rate data. I seem to be able to read my body much better as a result.

[PMR_sufferer1 in reply to PMRpro]

I havr posted this before so forgive me.My doctor has asked me uo be put on a trial run by Cambridge Uni based on the fact with PMR and other readings relating to well man clinic readings.

We will see what happens and if i get a smart phone style heart reading monitor as part of the trial.

I feel fit PMR is under control but obviously they think i am worth doing research .

[Bluey-1 in reply to PMR_sufferer1]

I do wonder if the atrial fibrillation is due to the steroids, especially as I was on high doses for GCA but who knows?

[PMRpro Ambassador in reply to Bluey-1]

They often make it worse - but increasing my dose helped me a lot at one point.

[Bluey-1 in reply to Hulotsholiday]

Interesting. I chose a Garmin watch instead of Apple due to longer battery life and doing everything apart from the ECG Apple watch does. I was aware that my resting heart rate at times is high and the HRV can be all over the place. I can go from a low resting heart rate to suddenly very high for no apparent reason on occasion. After the TIA and three ECGs it was clear there was atrial fibrillation. Bizarrely on the Apple health summary on my iPhone, on the ‘Get more from Health’ articles, on many occasions there has been one, ‘Understanding Atrial Fibrillation’ along with ‘Understanding Hearing Loss’. Apple synced with my health apps (Garmin). Now on medication there is no reference to articles on atrial fibrillation, just hearing loss! Strange or what? When this watch needs upgrading I may well go all out Apple. It’s just a nuisance having to recharge so frequently.

[Hulotsholiday in reply to Bluey-1]

The most recent models claim to have better battery life…but who knows. I put mine on charge for around 30 mins when I go to bed, whilst I’m reading, then wear it all night. First thing on the morning, I do the same and it ps only off my wrist for 30 or 40 mins whilst I have a coffee. It’s currently set specifically to identify AF and monitor average time. Over last two weeks it’s been 2% or less 👍

[PMR_sufferer1 in reply to Hulotsholiday]

Just for the record i dont have AF or COPD or Heart Failure i think they just think i am at risk hence there interest in putting me in the research programne. My smart watch tells me i have an excellent cardio vascular score for my age lets hope that stays the same.

[Bluey-1 in reply to PMR_sufferer1]

My smartwatch fitness age tells me I’m in the top 30% for age and gender, age 64, instead of my real age of 68. God knows what that’s all about with my GCA, Oral Lichen Planus, TIA, atrial fibrillation, osteoporosis and associate medications.

[Bluey-1]

That’s not too bad on a fast charge. I’m an Apple phone etc so I was tempted at the time but my phone was only a 7 so wouldn’t have paired with it. I’ve since updated the phone but splashed out a lot on the watch so will have to wait now.

[PMRpro Ambassador in reply to Bluey-1]

Mine's a 7 too - will have to wait for the daughter to upgrade again! She hands out her cast-offs and I was down the list ...

[Bluey-1 in reply to PMRpro]

I’d replaced the battery on my iPhone 7 but a year later it was draining quickly then there were no IOS updates for the 7 so I took the plunge. I’ll keep the 14 I bought new until it’s end days. So expensive but you can’t function without one these days.

[Ridge]

There is the Kardia! However you need to know you are having an Afib episode so that you can take a reading. The readings are useful for the medics. The cardiologist recommended it. You need a smart phone to link it to but no need for the latest model.

[Bluey-1]

What is the kardia? I’ve no idea if I’m having an Afib episode. Just notice heart rate /stress shooting up on garmin app, sometimes after getting up but then not settling down easily.

[PMRpro Ambassador in reply to Bluey-1]

You find if you are having an episode by looking at a recording any time you see your heart rate shooting up. Even plain old tachycardia (fast heart rate) is an arrhythmia and then they need some evidence to decide if it is innocuous or not and whether it needs investigation.

[Bluey-1 in reply to PMRpro]

Ah, so that counts. I can take a screen shot on my phone. Thanks

[PMRpro Ambassador in reply to Bluey-1]

Once the doctor sees the evidence, they will arrange a medical device monitor if they think it is merited. They are only any use if you have an episode while wired up of course! Depends on the device you have - some cardiologists accept what they get from the patient's device. The most important medication for an arrythmia is probably an anticoagulant - they are the same whatever the problem.

[Bluey-1 in reply to PMRpro]

In which case I’m already being treated. Things have felt a lot calmer thankfully.

[PMRpro Ambassador in reply to Bluey-1]

Over and above the anticoag it really depends if it is bothering you - too often, too long, you feel ill. The anticoag is to prevent clots forming in the base of the heart because if the irregular heart beating stirs them up and they set off through the bloodstream they are a risk for stroke.

[Bluey-1 in reply to PMRpro]

…which to my cost I’ve discovered re the TIA. Thanks for the explanation.

[PMRpro Ambassador in reply to Bluey-1]

Exactly. And why any suspicion of irregular heart beat should be investigated, even if mild and infrequent - because prevention is always better than cure ...

[PMR_sufferer1]

Your right your cardio health us measured by your resting heart rate I think exercise over years makes a difference.

Eat well high fibre stuff thats goes through your gut fast. Also probiotics drinks help.

Good luck in your journey.