Health Saga continues with Arrythmia

[Pawscat11]

My health journey continues with a scare just before xmas when I thought I was having a heart attack. I really didn't feel OK and my heart felt it was bouncing out of my chest. I had reduced to 5mg of prednisone from 20 mg very fast and did panic about an adrenal crisis. Since then I have been diagnosed with arrhythmia after wearing a halter for 24hrs. I had 95000 heart beats and 25000 were irregular so 25%. It never changes unless in a deep sleep. All scans and ultrasound indicate a healthy heart with no sign of mechanical problems only software. I have been put on Beta blockers for a month then to repeat halter test. Consultant is already muting ablation. Is anyone familiar with this and is any of it steroid linked at all? I feel I am a walking health disaster atm and its really getting me down now. any thoughts/help would be really appreciated. I am still in the blood letting monthly phase of hemochromatosis as well although ferritin levels have decreased from 780 to 555 atm. Taking pregabalin for sciatica as well. I am supposed to reduce the pred this next week and have no idea how all this is going to work together at all.

[Fatsiajaponica]

Hi, just wanted to reach out as you are feeling fed up. I guess we all know that feeling at times and can really empathise. I am unable to give advice but have come across many on this forum who have had AFib etc...so you will get replies from those who know. My understanding is that the ablation is a common procedure and have friends who have experienced it without any issues and it seems to have worked for them. Others will advise on whether this is a time to taper down from 5mgs. Given your recent struggles personally I would hang on for a bit until your AF is settled. Take care of yourself🫂

[PMRpro Ambassador]

My a/fib was caused by the autoimmune part of PMR - it was there but not diagnosed long before I started pred. It always got worse during a flare. I was well managed with medication until 2 years ago when the Covid bivalent vaccine kicked it into life and I finally had an ablation a year ago, just over a year later. A few weeks later I had a bisphosphonate infusion which triggered atrial tachycardia!!! I'm cured of the atrial fibrillation I think though and the tachycardia is also now gone - in time for the next infusion!!!

I was told that had I been diagnosed these days at the age I was then it would be straight to ablation - the sooner it is done, the more successful it is. And at your age - absolutely. At 70 I was now on the cusp - but considered young enough and fit enough for it to be worth it. The medication tends to be successful for several years but then fails, and there is a restricted choice of drugs. Over 70 they are pickier who they offer it to and at 80 it is far less likely to be considered/offered.

I was just disappointed not to have been offered ablation sooner but I suspect I didn't make enough fuss when I did have episodes. There isn't that much they can do and you aren't likely to die if the rate is moderate so I would sit it out - to be fair, 2 hours was a long episode prior to the vaccine but after that it was up to 12 hours at a time at 125-130 max which made me feel rubbish. I'd have had to bother the ambo service here and just didn't think it really justified that since I live alone and wouldn't have driven in. At its worst it was 50% of the time - but my pacemaker check wasn't due until after the expected date of the procedure. Otherwise, I suspect they might have been a bit speedier about it.

[Pawscat11 in reply to PMRpro]

Thank you for that. I will take all that into consideration. I was just blindsided by it a bit really. Its 90 % of the time which is why he is only giving the pills a month.

[PMRpro Ambassador in reply to Pawscat11]

I've had a long time to get used to it so am probably more relaxed about it than most. But I do feel an awful lot better since the ablation! Not tired in the same way and the swollen ankles I'd had for ages that were being blamed on poor venous return are gone!

[Bluey-1]

I have had a similar experience to PMRpro, except I’m a GCAer. I sometimes think she’s my twin! I was diagnosed with Afib after suffering a TIA in 2023, given beta blockers / blood thinners and sent away. Suffered for 10 months with episodes increasing as she described for up to 12 hours, feeling rubbish. I was 70 this Christmas so on the cusp, but pre GCA I was quite fit. NHS consultant I saw attempted to fob me off having an ablation - long wait list? cost? My co-morbidites? I don’t know but I went privately and discovered I had Afib/atrial flutter. I don’t regret having the ablation sooner rather than later. Much improved and off beta blockers at the moment. Still have the odd episode every 7-10 days (one this week after an infusion) so will return to beta blockers to hopefully keep stable. It is hard work keeping on top of the meds and ailments. For the first time in years I am looking forward to a long haul holiday. I suspect the cardiac stuff was making me feel worse than the controlled with pred GCA. Good luck.

[Rose8950]

I have both,PMR and have had Afib for 12 months. Since the beginning I only had one episode of 20 minutes to 90 minutes once a month. Last week I had Afib episode three days in a row. I was just so discouraged since I am only at the beginning of this PMR adventure, (diagnosed in November, first flare in January)

Since my dose was increased from 20 to 27 that’s when the Afib started waking up after two months with nothing. Since then I am more tired and feel numbness in my left arm and shoulder. The energy and tiredness weren’t an issue before, I walked every day and stayed active. I surely don’t want to increase I should be going back down instead.

Every posts I read are about people who are on dose below 10. I am now down to 26,5 and feel lousy both physically and mentally. I only see my rheumatologist in one month. 😫😢

[Pawscat11 in reply to Rose8950]

I am sorry about your afib increase. Higher Prednisone does create more adrenalin which is what the beta blockers they have given me are trying to stop so I presume there is a correlation. I am sure someone here will have more knowledge than me. I have been on Prednisone for 5.5 years and only just got below 10 in last 4 months so dont be too discouraged yet.

[PMRpro Ambassador in reply to Rose8950]

Obviously you are someone where the pred makes it worse - and have you reported the worsening of the a/fib to your doctor? Above all the left arm and shoulder symptoms?

And if you have been told that you have PMR and are needing 27mg, I think someone should be looking more closely - though I assume your flare in January was probably caused by trying to taper too much and too soon. You say you went back to 25 and that didn't work, sounds as if 27 isn't doing the job and THAT must be taken as a sign this may be more than "just" PMR.

Can you contact your rheumy? If not, see your GP and get them to contact them sooner if possible.

And I would suggest you go back to 25mg since that is the dose the rheumy suggested and it sounds as if the a/fib was better at that. If it is PMR that should be enough - and you do need to be able to tell the rheumy how you are on HIS dose.

You are reading about people on 10mg who have had PMR for a much longer time. Nothing happens quickly in PMR and first you have to get your symptoms under control - even if that means waiting for things to improve AND resting plenty. You cannot continue with the lifestyle you had before if that involved a lot of busyness, cleaning, running around after others and "doing" things. Rest and pacing are essential in the early days - you can start to increase activity later, but only a bit at a time to be sure your body can cope with it. Otherwise you will end up back at the beginning again.

[Rose8950 in reply to PMRpro]

Yes, I contacted my rheumy and my GP. They both confirmed that the Pred is responsible for more frequent episodes of Afib like I I had last week. A friend who is an internal medicine specialist also confirmed their opinion. Luckily I haven’t had any in five days. I take beta blockers but Pred can also make my heart beat a little faster. Pain in my left arm has disappeared today, I had a good day, a little less tired. My tapering is going to go very slowly, .5 mg at a time. My rheumy sent me some 1 mg pills and I’m now down to 26,5 and doing OK. Hope it continues I’m going to a nice concert tomorrow night.

Slowly but surely, thank you for the precision about people who are on lower doses but have been on this journey for a few years.

[PMRpro Ambassador in reply to Rose8950]

I don't agree with saying "is responsble" - it should be "can be" or "may be". It certainly didn't for me, it was the PMR that caused my a/fib and any flare of inflammation made it worse, pred improved it.

However - whatever the cause of the arrythmia, it needs to be managed and needs a cardiologist opinion as to whether anticoagulation is required. An arrythmia is an arrythmia and it has the same effects whatever causes it but non-cardiac specialists often dismiss it.

[Rose8950]

Thank you so much for your concern and your sound advice. I am also on the forum for Afib , I was diagnosed with Afib last January, cardiologist put me on blood thinners (Eliquis) and beta blockers (Metoprolol) . I’ve had MRI exams and echo of my heart and everything is normal. Since I don’t have any aggravating factors when I do have episodes, the cardiologist doesn’t think I need an ablation right now maybe later if they are more frequent. I do believe that the Pred and PMR flare can cause these Afib to happen. I will be on the watch but as my GP told me , stop worrying, it will make things worst, because a lot of stress can cause Afib and I must say I’ve been stressed with my PMR since two weeks with the flare I had at the end of December.

Things are improving and I am going to keep a positive outlook on my condition.

If I compare with how I was feeling in early November before I started treatment to how I am feeling now. I must admit my condition has improved of 90%.

A little more tired, a little more irritated, a little soreness in my shoulder from time to time. I can live with that.

Life goes on…….even with PMR.