~Any one with PMR had PVI for Artial Fibrillation ?~

[Megams]

~Hi dear friends

Haven't posted in a while but tried to reduce my hydrocortisone Sept 2021 D/L dsns method over 3 months of only 0.50mg - by Nov/Dec felt dreadful - Rheumie wanted me to step back up by 5mg am & pm (hydrocortisone). Felt so much better.

Last year 3 hospitalizations for atrial fib.

Underwent private PVI (cryoablation) 8 Feb 2022 as heart now in early heart failure & wanted to take every opportunity to try & slow further damage.

Now having ongoing spikes in b/p every time I move from sitting to standing/walking, mainly in the morning & at night.

Now on 12.5mg Losartan as of Monday - b/p 170/100. I'm on a cocktail of other heart meds too with aim in time of reducing.

I did hemorrhage day after surgery - no one checked with blood tests so assumed I was OK. Been building my strength & energy back with Floradix which is working since blood test yesterday.

My TSH levels have dropped from 3.8 in (January 2022) to 1.1 (23.2.2022).

I am clearly not feeling great & wonder if anyone with PMR has experienced this or familiar with what I am talking about?

Beautiful summers day in Auckland with 6,000 confirmed Omicrumbs in the community.

Stay safe where ever you are ~

[DorsetLady PMRGCAuk volunteer]

No advice on AF…but just wanted to say hope you’re soon feeling better - and stay safe - particularly bad in Auckland. 🌸

[Megams in reply to DorsetLady]

~Lovely to hear from you D/Lady - thank you for your kind wishes. Staying put not that I am permitted to drive for another 4 weeks.

Safer to stay away from folk as our daily numbers climb - still a lovely summer here & hopefully peak of Omicron reached before winter so our hospitals cope ~

Please stay safe ~

[DorsetLady PMRGCAuk volunteer in reply to Megams]

Was talking to daughter yesterday evening, and skim the Herald every day, so keep abreast of your news…as you say, fingers crossed you can get numbers down before winter comes.

[PMRpro Ambassador]

They refuse to do any form of ablation for paroxsysmal a/f here except as a last resort because the rate of relapse is so high. So really haven't bothered looking much up. They start with medication - and a pacemaker! Seems to work OK most of the time.

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

[Megams in reply to PMRpro]

~Hi PMRpro - thanks for your input & link.My issues have been ongoing for sometime - meds don't hold my a/fib for any length of time otherwise I would have stayed firmly put.

I was aware that one ablation is often not enough - I've been given 75% chance of this working so decided that due to now being in early heart failure area (3 leaky valves + enlarged atrium) I was prepared to take a deep breath & go for it.

I'm praying in earnest that this operation is going to hold.

My b/p is certainly not stable but hope this will improve once new meds takes hold.

For the 1st time in so long my heart is quiet + I can sleep on my left side

They don't pace for my situation I was told ~

Please stay safe ~

[PMRpro Ambassador in reply to Megams]

They pace in order to be able to medicate the a/f more but I was having bad bradys anyway. I have brief episodes quite frequently - HR 120-130 and very fluttery for an hour or so, not every day and not that bad if all I want/need to do is sit and get on with the forum. But they have a habit of a series for a few days either at 1am which wake me up or early evening when I want to cook my tea and leave me feeling not enthusiastic about standing for long! They are also a consideration if I go out since I am always on my own but apparently it doesn't qualify me for a parking badge.

[Megams in reply to PMRpro]

~Am I right in thinking you are in Italy? They obviously do things differently. Certainly would have been favored option of mine to pace .

Can never understand why episodes happen in middle of night when asleep - one would assume body restful/relaxed state but our electric's think otherwise

Can certainly identify @ days end when trying to get dinner cooked & raised HR - disconcerting but telling us to sit down.

Sorry about the no parking badge - that adds further to your challenges which you clearly don't need ~

[PMRpro Ambassador in reply to Megams]

They even do things different here to the rest of Italy - and to be honest, I suspect it depends on the individual doctor. The two I have seen here have different ideas. And then there is the useless little prat on the ward who tried stopping the antiarrythmic altogether because "it obviously isn't doing anything" - claiming she also had experience ... Had worked very well for the last 7 years - and is working OK now the stress is less. Her biggest sin as far I was concerned was not discussing it with me. I will refuse to have her in charge of my care ever again - she failed OH big time, she won't get the chance with me if I am compos mentis!

[Megams in reply to PMRpro]

~Good on you PMRpro - we must always be our own best advocate always!!!Senior nurse tried giving xtra 10mg Xarelto with my usual daily 20mg dose.

She couldn't read my notes - I was kept xtra night due to hemorrhage previous night

Please God I've can keep my marbles for long as poss

[PMRpro Ambassador in reply to Megams]

Dear lord - not sure, but it might have been that one that nearly killed OH 3 years ago and really started it all. Xarelto rings a bell. No-one told him not to take it at the same time as another heart drug and the blood level just climbed and climbed. But the surgeons stopped it altogether until the blood level was where it was meant to be - the head of our lab is a nerd when it comes to that sort of stuff and insisted on having the assay requirements to hand. Then we looked at mine - potentially the same problem.

The thought of 30mg instead of 10mg sends shivers down my spine! And the average lady of our age wouldn't even twitch and ask ...

[Megams in reply to PMRpro]

~Oh deary me - what a chain of events - glad OH + you were finally sorted to tell the tale ~Stay well + OH

[PMRpro Ambassador in reply to Megams]

Did you not see? My husband died at the end of October.

[Megams in reply to PMRpro]

~Oh PMRpro - how did I miss this?So terribly sorry, no I didn't see that at all - there was a period of time when I wasn't online late last year.Please accept my sincerest belated sympathy.

What an awful time for you & with covid rules restricting life for you too no doubt.

Please take good care & sending abundant virtual hugs ~

[PMRpro Ambassador in reply to Megams]

I don't think Covid made as much difference as it might have - it made being stuck at home easier in many ways - no-one else could go out either! He hung on until the girls were able to finally visit and not have to spend a couple of weeks in quarantine when they got home and they extended their stay to be able to help me.

[Megams in reply to PMRpro]

~Bless him his dear heart for holding on until the girls able to be home. Relief that quarantine not required either.Please take extra care of your good self & really hope that you have support around you where possible.