Revenge of af

[Trish21]

So after a few weeks of pred slowly reducing and recovering from biopsy/MRI etcetera, yesterday was an opportunity for some family time with my son daughter in law and grandson. Lovely light buffet and a glass of fizz, fabulous. Until the return of my af. At about 4.30 I go into af with horrendous jaw neck and arm pain. Get to urgent care centre, heart rate was batting away at 148 bpm, up and down like crazy, ambulance to a&e and after 3.5 hours back in sinus rhythm and back to my normal hr of about 55 bpm. Why????? Doc says pred not to blame, carry on with preventative meds and you will be fine. It's been a whole year since my last episode, ah well could have been worse I guess.

[PMRpro Ambassador]

", carry on with preventative meds and you will be fine" - sez he!!!

You have my sympathy - in much the same boat although to be fair, I don't get real chest pain and on arriving at A&E on the one occasion I went in it had gone. So I rarely bother even thinking about it!

However, I'd lay odds that "after a few weeks of pred slowly reducing" has something to do with it. In the spring I found that at 7mg I had almost constant episodes, short but frequent. At 8mg it was noticeably better, at 9mg as good as gone and the medication was enough. In September I developed a proper PMR flare, the a/f was back and then my legs got more and more sore - flare. I raised the pred dose, first to 10mg and finally to 15mg to get it under control. This isn't a flare due to reducing too far, it is an increase in disease activity. At 15mg the a/f is pretty much under control, if I drop to 14mg after 3 days the a/f is back in all its glory. It starts late evening, shortly before midnight, it makes no difference what I have done or drunk in the previous hours, and keeps me awake for a couple of hours and then must calm down as I go to sleep. During the next day I have episodes of dizziness, really brief, just a few seconds when my ears really sing and then it is gone. I have maybe up to half a dozen at most and they are gone - until the next time. Which may be the next day or a few days later. But at a constant 15mg they simply don't happen.

I have seen the cardiologist, she agrees with my theory that the a/f is closely allied with the vasculitis and it is happening with the increased inflammation. She can't offer me anything else in the way of medication for the a/f - so if the pred does the job, take it and be grateful. So far the rheumy hasn't complained and the GP (also rheumy trained) is happy enough.

[Trish21 in reply to PMRpro]

Hi, thanks for responding. I always get jaw pain with my af, my normal hr is usually 55 bpm so to get up to 130 150 bpm is a real problem for me. I take antiarythmic medication each day but as of today i'm going to keep some with me at all times just in case. I have a coronary review soon with practice nurse so I guess it will all need to be looked at. I guess now it's a question of finding the right dose of pred to keep me functioning, ah well ce la vie.

[PMRpro Ambassador in reply to Trish21]

I take the pills all the time - but they don't have any immediate effect at the time. Wish they did! I don't get the jaw pain (at least can't say I have noticed it - but I do remember having it very slightly and briefly once or twice years ago, long before I realised what it was.

[Trish21 in reply to PMRpro]

Well I guess I am just going to come out of denial and grasp the nettle on this one. Tried going teatotal still got af, gave up coffee, still got af, I am going to make an effort to drink more water though. I have paroxysmal af so not in it all the time, so now back to living life never knowing if I am having a flutter which will develop into a full blown episode, but as I say, could have been much worse. Onwards and upwards.

[PMRpro Ambassador in reply to Trish21]

Snap, snap. OH has permanent a/f and apart from having no energy and being unable to walk up even gentle slopes (also due to never having any exercise as he is lazy and unconvinced of its value) doesn't notice. I on the other hand have paroxysmal and it is an absolute pain when it happens...

[Trish21 in reply to PMRpro]

Yeah it's a pain, just one of those things. Btw do you ever have problems with electrical appliances? I.e when you are near they turn on or off? I have had quite a number of these instances also, tv turning itself on or changing channel, car radio turning itself on even though keys not in ignition, it's an old car, shredder at work starting when I am in close proximity to it? Wondering if it's a weird electrical thing or am I being visited by the other side just to add to the mix of weird.

[PMRpro Ambassador in reply to Trish21]

Blimey - not that I have noticed!!! Though I detest computers - and OH insists it is always something I've done when it plays up! But he's getting his come-uppance - his new computer is being an absolute pest, turning the screen off after a few minutes of non-use and he can't persuade the delay to change!!!!

[Constance13 in reply to Trish21]

I don’t have things ‘turning on or off’ but machines don’t work for me - like coffee machines, microwaves, getting things out of electric machines, etc - I put money in but nothing comes out!!

Not sure whether we are blessed or cursed!

[piglette in reply to Constance13]

I have that problem, my fingers seem to work like the death ray when touching any sort of electronic machines. I have never taken cash out from a hole in the wall for that reason. There is an array of broken machines over my life. I suppose it does stop me buying chocolate bars when passing a machine.

[Constance13 in reply to piglette]

Exactly! 🎄🎄🍾🍸💥

[coda123 in reply to PMRpro]

Thanks for this post PMR, I've been feeling the same fast heartbeat and ear singing as I have come down very slowly to 12.5. I'm on cardiac meds as well. I've been told by GP that I have steroid myopathy as my arms, thighs, and neck are very weak and I'm very short of breath. I'm wondering now if going back up might be a good idea. Your advice is always appreciated. Hope your holiday is full of cheer.

[PMRpro Ambassador in reply to coda123]

My shortness of preath is NOT steroids - it is the a/f. It is such a pain when they fix on "OA", or "steroids" as the cause of whatever and won't think laterally.

[coda123 in reply to PMRpro]

Sorry PMRpro, I misunderstood your previous reply to Trish starting with "However, I'd lay odds that "after a few weeks of pred slowly reducing" has something to do with it." Next time I'll read carefully.

[SheffieldJane]

Wow! Trish, what a shock - ailments from happiness maybe, believe me, it’s a thing. Rest, rest, rest!

[Trish21 in reply to SheffieldJane]

Bless ya, I need to get some balance.

[coda123]

sounds very scary Trish, I hope you feel better soon