Off pred

[Exhiker]

Well I've now finally come off prednisolone after 3.5 years and I found you very helpful and supportive. Unfortunately I've had to join the afib support group because just as I've finished with pred I've now had to start beta blockers and blood thinners. I think I'd rather be on Pred. One thing after another!! Ended up in hospital and diagnosed with paroxysmal afib but interestingly enough there is some on the afib group who also have Pmr and think the afib is linked to prednisolone use.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about you AFib - good to hear you are off Pred . Good luck in future 🌸

[Exhiker in reply to DorsetLady]

Thankyou DL

[PMRpro Ambassador]

Not necessarily at all. I have both PMR and Afib and have been on pred, beta blockers and anticoags for about 10 years altogether. I had an ablation in January which sorted the Afib but shortly afterwards I had a bisphosphonate infusion - and it caused atrial tachycardia!! However, that seems to have quietened down now.

However, for me the Afib started at the same time as the PMR symptoms and definitely had nothing at all to do with the pred as it was 5 years before the PMR was diagnosed and I was put on pred. In fact, the PMR was worse when I had a flare and I seemed to need more pred to manage the Afib. That isn't to say that pred doesn't cause arrythmias in some patients.

Good luck of pred - but do be aware, the PMR can be at a very low level and while 1/2mg can keep it all quiet, zero is sometimes a step too far and the inflammation builds up again. If that should happen - don't be in denial!!!

[Exhiker in reply to PMRpro]

Thankyou pmrpro. I have been more worried about going on blood thinners than I ever was about pred. I did stay on 0.5mgs for some time and then decided it was time to try without but I know one day, although I hope not, that I might end up back on them .

[PMRpro Ambassador in reply to Exhiker]

They really aren't that bad! I was on something like warfarin for a few years until suddenly we couldn't get the INR stable - when I was put on that it was not yet common for the NOACs to be in use although now they are standard practice for a/f/. I was offered a choice: 2x daily or 1x daily. It so happened the 2x daily, Pradaxa/dabigatran, already had an antidote and the other didn't so it had 2 advantages if anything happened like needing surgery - it was out of the system faster and if that wasn't quick enough, there was the antidote. Now I'd take a 1x with antidote. You do need to be careful if you are on other medication - some of them must not be taken at the same time as the anticoag or the blood levels rise and put you at risk of bleeding so look them up and be good about timing. I have my stuff in a dosette box and set a phone alarm. And some just plain interact but your cardiologist will know about that, Question a GP who wants to give you something - statins and antidepressants may be a problem if you are on an antiarrythmic drug.

ahajournals.org/doi/full/10...

If you get very bruisy - report it.

WHY are you so worried about the anticoag? What are you on altogether?

[Exhiker in reply to PMRpro]

I'm on rivaroxaban 20mgs, enalapril 10mgs BD and bisoprolol 5mgs. I'm not sure why I was worried just the thought of the risk of bleeding I think. I don't feel that great, still waiting for more tests on heart.

[PMRpro Ambassador in reply to Exhiker]

Once you get the episodes calmed down you should feel better but I cannot believe how much better I feel since the ablation in January. I'm sleeping like a log compared with before - it was obviously waking me a lot. I had been nagged at to wear support stockings for puffy ankles - no chance, couldn't get them on! Though I suspect getting them OFF for anything would have required a nurse attending to do it! Didn't seem to occur to anyone it was the a/f - and since the ablation my feet are back to normal relatively skinny and my shoes aren't fitting as well! Here they say 70 is about the cut-off age - at 60, definitely ablation, 80, probably not and 70-ish depends on the patient, If they are still active and engaging in social pastimes etc, it will be done. Thank goodness I was considered active! If it doesn't get mentioned - ask. They can only say no. If I needed a second, I'd grasp the option with both hands.

[Exhiker in reply to PMRpro]

I'm glad your ablation has worked so well for you. That's good news.

[SheffieldJane]

Great to be done with Pred. Sorry that you have AFib though. Good luck going forward! 🍀

[Exhiker in reply to SheffieldJane]

Thankyou SheffieldJane.

[Pixix]

My Dad, Mum & Husband all have/had Afib…& none of them took pred!! I’ve had a lot of side effects on pred, but just had two months on beta blockers & it’s been dreadful! I’m about to wean off them! I was taking them for bad essential tremor, but I’d rather have the hand & arm tremors than the beta blocker side effects!! My Dad, & my husband was/is on warfarin. Hubby has been on it for about 18 years &, in the main, been incredibly stable on it & onky had blood tests every 3 months. Sorry youhave afib, but, hopefully, you will be like the 3 in my family who led perfectly normal full lives, despite it.

[Exhiker in reply to Pixix]

Thankyou pixie, I think it's just getting meds sorted, don't feel well but the trouble is in nhs everything takes so long to be done/reviewed.

[Pixix in reply to Exhiker]

Oh yes, indeed! I recentky queued for 4 years to see a Neurologist, & am now queuing (18 months so far & no appointment date) for a rheumy (not related to PMR)! It’s why they call us patients! (Patience)…

[Broseley]

I have had AFib (paroxysmal, symptomless) for 5 years before developing PMR and GCA and I'm on edoxaban, bisoprolol and amlodipine. The 40mg of pred I was on to start with gave me loads of energy and triggered palpitations and a pulsating in my left ear. This all stopped when I got down to about 20mg. I am sure there was no link with the AFib.

[Exhiker in reply to Broseley]

Thankyou Broseley, I think what I read on other group that people being a bit misguided.

[PMRpro Ambassador in reply to Exhiker]

To be fair - as I said before, pred CAN trigger palpitations but it is perfectly possible the tendency was there anyway and pred took the veil away. Could be either. But many doctors will blame pred for ANYTHING that turns up!!!!

[Broseley in reply to PMRpro]

Too true, as I did have a tenancy for palpitations anyway.

[PMRpro Ambassador in reply to Broseley]

My point exactly.

[Flivoless]

Interesting possible link between Pred and Afib. I have been on Pred for just on 3 years and suffered with Afib, leading to heart failure, just before Christmas. Never had any form of heart problem before in 73 years. Luckily, switching me off and back on again cured the Afib and left ventricle went back from 20% to 98% very quickly. Never considered it could be down to the Pred but at the time I had reduced to 5mg per day and would thought if there was a link it would have manifested itself when I was on the higher doses. Could be cumulative I suppose 🤔

[PMRpro Ambassador in reply to Flivoless]

In my case, the afib was unrecognised but probably due to the autoimmune part of PMR having damaged the sinus node that governs heart rate. Higher dose pred (not above 15mg) improved it but it tended to worsen as the dose went down - so I tended to stick at a slightly higher dose since the cardiologist couldn't offer anything more. So that is a possible association for you - or just coincidence.