AF

[Whatgrange]

Has anyone any experience of an AF episode perhaps being triggered by their steroid reduction? Just wondered !

Thank you, all you wise people!

[PMRpro Ambassador]

I have AF which was almost certainly caused by the autoimmune part of PMR damaging the electrical cells in the heart that govern heart beat. It started about the same time as the PMR symptoms and occured very occasionally throughout the 5 years before pred entered the game (it simply wasn't diagnosed and the palpitations got the same blame as the aches and pain: your age). After pred I think it got somewhat better until about 6 years ago when I had a bad PMR flare and had severe back problems as the myofascial pain syndrome that accompanies my PMR went mad. I was admitted to hospital for a standard procedure for the back spasm which involved i.v. diazepam as a muscle relaxant. That triggered a major 4 hour AR episode, a whole new experience because usually it was 1/4 to half an hour and gone. They thought it was the high dose pred so stopped that - but it happened the next night too: it is a rare but known adverse effect of i.v. diazepam but it didn;t really go away. It's been well controlled until this last winter. In May it was found I was not only having AF episodes, but they were being followed by rather long asystoles (no heart beat, they were up to 7 secs long) so I have a pacemaker to stop THAT little gem and the AF medication has been tweaked, but maybe not enough! We'll see.

But in your context: it was always worse if I was in a flare and the asystoles (the only thing I could feel really) could be managed by increasing the pred dose. Initially I had episodes at 7mg, fewer at 8mg and none at 9mg. Then I flared a bit, 10mg helped briefly but I had to go back to 15mg for the PMR symptoms - as soon as I reduced to 14mg the AF problems resumed after about 4 days at 14mg. At 15mg liveable with, at 14mg they weren't.

I am sure that arrythmias are more common in patients with PMR/GCA - I asked a rheumy if she found it and got the usual get-out "It's more common in that age group". Which wasn't what I asked - I asked do WE have more than our peers. However, I did find articles that agree with my suspicion: the a/i aspect can lead to an increased incidence of AF.

Another thing I learnt in hospital is that magnesium is very instrumental in managing AF - they brought me a small bottle of magnesium when I was having a tachycardic episode and recommended me to get it and take it regularly when I first came home post pacemaker. Then they said use it as and when - which I did and recently the AF has been worse and longer episodes. I have taken the magnesium more regularly the last few days, no AF last night. Again, we'll see but pred increases the amount of magnesium we lose through the kidneys - there is a logic in taking more magnesium.

[Whatgrange in reply to PMRpro]

Thank you! Mine started after my one and only 2 hour chemo session which resulted in DVT and 3 pulmonary emboli!! I’m beta blockered and anti coaged and haven’t had any more episodes until last night! But I have been up to 20mgs for 7 days for a flare and am now 10 days in at 15 - and feeling ok. It’s still going on but my heart rate is reducing. I’ll have it checked out on Monday. I was just interested in the possible steroid connection.

Thank you for all your work!

[PMRpro Ambassador in reply to Whatgrange]

It will depend on the underlying cause - but inflammation is one I believe. My cardiologist was quite sure that the AF etc is linked to the vasculitis.

[Blearyeyed in reply to Whatgrange]

I have begun to have these episodes , but in my case , they may be influenced by the Steroids or PMR, but are caused by a different condition called Dysautonomia/ POTS

( Postural Orthostatic Tachycardia Syndrome) part of the other Syndrome I have been diagnosed with Ehlers Danlos Syndrome.

So if your heart issues do get worse , although the PMR or Steroids can have something to do with it , it may not be the whole answer , and it does need further investigation via a Cardiologist , and sometimes a Neurologist , on its own.

My condition means that Beta blockers don't help me , they make things worse , so I am on enforced rest until the Cardiologist in Wales catches up with the Rheumatologist in Liverpool , confirms the type of POTS and tries a new medication.

The one thing they did suggest was that I had been helping my situation by taking the Magnesium I was using to help the Restless Legs and Muscle Cramps , as the issue for me is not Mechanical problem ( physical damage ) but a Neurological one

( uncontrolled and irregular signalling in the nerves) , they say the additional minerals may help it.

Not all of these things are because of Age , as Pro says , and sometimes they have been building up in the background as the odd dizzy spells or palpitations that we just learnt to deal with for years long before a PMR diagnosis , and as Pro says , having a Flare or being on Steroids can make it happen more because of the AI affects of the disease on the Heart and the Nervous system.

I am 48 , the symptoms have been happening off and on for over a decade , but the AF readings are a new thing. At a younger age you often get accused of Anxiety , even when the physical symptoms are the only things you suffer.

The only reason they are being taken seriously now is because it has begun to seriously impact on what I can do , but mainly because it was picked up by another Specialist and they had to act.

In my case , the Cardio symptoms are linked to the long term effect on the laxity of my blood vessels and the general Muscle Weakness and Irregular signalling that can happen with people with Nervous System Dysfunction and Connective Tissue problems.

These changes also affect the Immune system and increase the possibility of Autoimmune issues . The three dysfunctions together add to Cardiac reactions from all different causes both Normal Activities or Illnesses.

It definitely needs more discussion between hospital departments to get us to have a Care Plan that actually works for all of our issues.

[Whatgrange in reply to Blearyeyed]

Thank you! Your reply helps me to get things into perspective. The AF has stopped now. I tend to think it is linked in some way to my last 2 weeks of 20, then 10 days on 15. I’m definitely not in a steady state yet!!

Take care!

[Suffererc in reply to PMRpro]

What is AF. Would it be a good idea to use the unable intend term just once in a thread A..........F.........then AF from then on, please please

[PMRpro Ambassador in reply to Suffererc]

Excuse me - I only repeated what the questioner asked about. She asked about others with AF - anyone who has it would know.

Atrial fibrillation.

And actually - had you googled AF and discounted the social media use of the letters it tells you about 4 or 5 links down ...

[HeronNS in reply to Suffererc]

I use google all the time because people use various acronyms all the time. Sometimes you can get a funny or unrelated answer but usually it works fine. Asking google what is af gave me the defninition and links to more information.

[Whatgrange in reply to Suffererc]

PMRpro explained - but you have a good point and I’ll try to remember that in future in order to save others some worry.

Best wishes!

[Suffererc in reply to Whatgrange]

Didn’t mean to cause offence. MyGP talks with abbreviations and being hard of hearing I have to go home and try and remember what she has said to work out on the net what’s she is telling me.

[Whatgrange in reply to Suffererc]

The world is full of abbreviations, isn’t it? It can certainly get very confusing, especially when life is full of electronics as well!

Good luck!

[Hidden in reply to Suffererc]

Tell me about it. We have discussed a list of abbreviations but people in general tend not to bother looking at pinned posts. Since doing a bit more replying I have found myself doing more abbreviations to avoid RSI.😉

[Whatgrange in reply to Hidden]

😏💐

[HeronNS in reply to Hidden]

😆

[HeronNS in reply to Hidden]

Did you know that RSI can be Relative Strength Index as well as Repetitive Strain Injury?

Neither did I!

[Hidden in reply to HeronNS]

PMR is a company that do something with computers.

[HeronNS in reply to Hidden]

Of course it is!

Although my browser does give me polymyalgia alone for the first two or three pages. Maybe that's responding to my use of the internet???

[PMRpro Ambassador in reply to HeronNS]

Well trained - like mine!!!!

[Hidden in reply to PMRpro]

Do you use macros in your editing?

[PMRpro Ambassador in reply to Hidden]

For The Book yes. Otherwise, no.

[Suffererc in reply to Hidden]

Years ago I was in the armed forces and that is how we used to address abbreviations

[Achybreakyheart in reply to PMRpro]

Sorry you have such complex issues! Take care. I recently had a pericardial effusion. Can that also be caused by PMR?

[PMRpro Ambassador in reply to Achybreakyheart]

They really aren't an issue now I have my pacemaker!!!

I was going to say I don't think PMR would lead to a pericardial effusion - but I looked! And it can happen, but very rarely!

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

Now whether that is caused by the PMR is probably subject to dispute. But there can be an association.

[Legsy0714]

Nope. My AF is pretty benign and no chang since starting pred 11 months ago.