Thanks to those who responded to my recent posts re Resus and Atrial Fibrillation diagnosis. As always your help, support and encouragement made a difficult time easier.
I am now home with meds to control heart rate and precautionary blood thinners.
Having had a heart scan, prior to discharge, I now realise that the palpitations were not pred related at all since I have been diagnosed with abnormality of hypo kinetic lateral wall mild dental hypertrophy, overall systolic function. LVEF 50-55% with mild mitral regurgitation. (Whatever that means!) I will have follow up at outpatient Cardiology. Fortunately the hospital is a reputable Cardiology teaching hospital so should be looked after well.
Turns out I have had the symptoms for months, but put them all down to PMR and pred. So please........ check your symptoms with GP or consultant whether you think they are related or not. With a heart rate measured yesterday at 198 beats per minute I think I am lucky to escape with just being fatigued and a bit on the slow side. It could easily have been a different story. But I live to tell the tale so that others too might learn from my mistakes......... x
Written by
Marilyn1959
To view profiles and participate in discussions please or .
Thank you - this is one of my hobby horses: it isn't always pred. I don't care what your GP says, it can be indirectly related to the PMR too! At least I knew mine was pre-pred!
I asked a rheumy about a/f etc being more common in a/i disorders - the reply I got was "it's more common in the age group"
It was me blaming pred though not GP so GP wasn't even aware of the palpitations. I only told her about palpitations in my neck when we were discussing a growth on my neck which has a blood flow to it. She thought this unusual and did two week referral path for me on Friday. Monday I was in Resus. However GP was not fully informed by myself.
I wasnt blaming your gp or you at all. We all just assume most things are down to the pred becsuse we know it has a multitude of side effects. In your case you have been very luck no matter what the cause was. Hiw are you feeling now?x
Feeling wiped out as though in aftermath of flu, but no heavy head headache or palpitations throughout my body thank goodness. I was stupid not to have the palpitations looked into months ago. So consider myself fortunate really. Thanks for asking.
We all tend to ignore stuff and probably more so bevause we take pred amd just assume it one of those numerous side effects. But now you know and so do we because hopefully if someone else is experiencing odd stuff they will look into it sooner.xx
We are both starting a new phase of meds but let's hope that now they have found the problems we will be live and kicking with a healthy heart again soon.
We definitely need to Pace ourselves , luckily I have always loved a tortoise , hope you have too!
And definitely , as you say , it's important that we don't ( and our GPs don't!!!) always just assume every problem is because of PMR and Pred. Often , in fact commonly , it's not , and the same checks should be done on us to rule out other causes as is done on " Normal " healthy patients before those assumptions are made.
Hope you have a good rest and someone to help you recouperate at home.
The sooner it is found and managed the better - too much high speed work isn't good for the heart! But we fight a losing battle too often "it's the pred" - NO it isn't always.
A year of standing being the equivalent of a Cardio workout has definitely been more than enough for me .
First of the new drug this morning , I just said to YB , I wouldn't mind if they turned me green and my toes fell off if I could get back a bit of independence .
And it's not long until Christmas , so I could still make a little ice cream money at a Grotto playing the Grinch !😂😂😂
Maybe now the DWP will believe me when I say my mobility is affected! Scored 0!! Shame I have to have hard evidence of dicky heart to prove it, rather than them believing word eh? I am going to enjoy taking them to the cleaners!
Yes , they should start being concerned about requesting hard evidence .
My Medical folder is that full now if I hit them with it the Doctors and any "powers that be " will think they've been socked with a cricket bat !😋😂😂😂😘😘😘
Hope the new drug makes a difference. The workout analogy is so apt! I am in slow motion land today both heart rate and movement, almost feels surreal. Guess my palpitations have been happening for so long they became my norm.
Eeeeeek! I am being considered for ablation at the moment owing to my intolerance of beta blockers. I thought it would solve my problem. The A/F has been worse since GCA appeared.
betablockers alone would do nothing for me and I'm only on a betablocker because I'm allergic to ACE inhibitors. My friend who is under the Portsmouth arrythmia specialist cardio is on Flecanaide very happily most of the time.
My situation was the same as yours! This time last year I thought I was dealing ‘just’ (!) with PMR and preds. When I finally saw my GP ( having seen a newby doc a couple of times previously) I was quite tearful: everything physical had become such a struggle... and so breathless. He immediately said I shouldn’t be feeling like that, gave me an ECG and voila! Atrial Fibrillation as well.
Additional and appropriate meds. But unfortunately the AF is still the bane of my life as I have had 3 hospital procedures and I still have AF a year on. Am awaiting whatever the next procedure is.
I really hope your AF is sorted out swiftly - I am a bit unfortunate in being so medically ‘stubborn’! But - yes - a classic example of not just limping on, popping the preds
and believing every ailment we have is PMR!
Really really good luck - like PMR, AF may not be too unusual but it certainly is very very difficult to live with - quite quality of life affecting.
That's why they don't do them here until they have no other option - they dislike subjecting patients to a potentially risky procedure that doesn't have a particularly good success rate. I've been lucky I suppose in that the episodes are usually short and at night.
Now, if I take a dose of magnesium as soon as it starts that does stop it in its tracks. I have to buy the little bottles of magnesium pidolate myself but I think they are worth it (1.5g/10ml). Maybe worth a try? The pacemaker is also a safety measure in some ways, they can medicate the a/f more aggressively if needed without having to worry about bradycardia. They haven't put the doses up yet - but the option is there.
Regulates the irregular beat and gets you back to normal sinus rhythm and reduces the rate you hope. About the first thing they do here with an a/f patient is hang an infusion of magnesium and that often does it. The effect of magnesium is disputed - but there have not really been good well-powered studies.
I think this is quite a good summary of it in a/f:
It may not work for everyone but while I was in hospital post-pacemaker any time I had a tachy/a/f episode they appeared with a little bottle. I didn't really notice the figures, the ECG machine was behind me and it required too much effort to look at it! At home I took it 2x daily at first but then 1x daily and then at the last check-up she said just when needed. I don't have records of figures - not at midnight which is when most of the a/f appears! But having taken it I don't lie awake for ages which I do without it.
I've been reading about a trial that has been going on where, instead of a full ablation which is a major procedure (involving putting a us-shaped scar around the entrance of the pulmonary veins in the wall of the left atrium), they perform an ablation of the atrioventricular node which carries the electrical signal from the atria to the ventricles. Ablating this, which is relatively much more minor and low risk, leaves the atria fibrillating but detaches the ventricles from the irregular and rapid signals coming from the atria.
The natural ventricular rate is too low, however, at around 44 beats per minute. For this reason they have to then put in a pacemaker. I understand that symptom relief is good, but because of the continuing disorder in the atria you have to continue with anticoagulants. Having seen my wife's experience of a full ablation, I'd say this sounds a much better alternative, but I'm not sure what the trial outcome is.
There seems to be some dispute about the need for anticoags in a/f but I am happy enough taking them! At least - now we have established that it and the anti-arrythmic must be taken 2 hours apart (anticoag first, anti-arrythmic later) or the blood level of the anticoag is about 50% higher than it should be, even with the lower dose. Lot less bruises on my ankles now
It depends on risk factors such as age, gender and weight. Given the potential association between PMR and vasculitus I'd say you are wise to take them. Interesting about the anticoagulant and anti-arrhthmic, though. Which ones are you on?
Propafenone and Pradaxa/dabigatran. I'd noticed bruising happened every so often and that I could stop it by spreading the 2x daily dose out so it was more like 1.5x daily for a few days - it obviously let the baseline fall. So the head of the hospital lab and I have been doing an unofficial experiment - anti-coags are his special interest. Very informative!
I'm on Pradaxa - I was originally on Sintrom, a clone of Warfarin but for no apparent reason my INR went mad and we couldn't get it sorted. I chose Pradaxa because it is 2x daily - shorter halflife so faster to get out of your system, AND, even more important I feel, there is an antidote. I'm happier now we have adjusted the dose!
My husband was on Rivaroxiban but in combo with his other medication the blood level went to 10 times what it should be - the only way to reverse that is blood transfusions or wait as there is not yet an antidote. He could have bled to death - he has post-radiotherapy rectal bleeding anyway but in an accident he'd have bled out in minutes. So he went back to Warfarin and it is monitored rigorously.
They have put me on Bisoprolol Fumerate 2.5mg x1 daily and Eliquis Apixaban 5mg twice daily. I am taking these at the same time as 7mg gastro resistant pred in the morning. Should I be separating them or is it ok to take them together? I am concerned that I have been put on blood thinning tablets since I am due to have some minor ups in fairly quick succession ie removal of growth on neck (it has a blood supply apparently), toenail removal and ten teeth. I also have to have a course of antibiotics every time I have any surgery (for life) due to shoulder replacement. I now carry three emergency cards on my person - steroids, antibiotics, and now blood thinning. Who said life began at 60?
It's the exciting things that get going to replace the normal adrenaline rush!
I would think that gastro resistant pred at the same time is OK - it won't be absorbed for at least 3 to 4 hours as it passes through the stomach first anyway.
Couldn't they take you in and knock you out and do all 3 things at the same time????
Brilliant idea. Three for the price of one!!! Ha, ha. Don't think Magnesium would work for me since I have looked at discharge letter and mine is Atrial Flutter not Fibrillation so I am normal, you however are not!!! Ha, ha. Just had ingrowing toenails sorted by Chiropodist until the next time. Didn't bleed to death as I thought I might having been on blood thinners. Now heart is only beating one third the speed it was I felt very laid back, or perhaps it was due to the numbing cream I had smothered on beforehand. Whatever feeling a bit surreal and floaty at present. Is this normal on Bisoprolol and blood thinners?
Mg is also used for tachycardia - no harm trying. No, more likely the strange heart rate I'd have thought. But maybe I'm just lucky. Not a lot of things make me feel yuk. But when they do they go for it!!
The Apotheke in the village It is available online but it's the dose that seems important - 1.5g (1500mg) is rather more than most supplements - and that it is liquid for speedy effect.
Some people seem to up their magnesium intake on a permanent basis. What I found interesting was despite the highish dose there were no laxative effects while the a/f was being a pest.
It's probably because you need it , the laxative effect often happens with many drugs because of overload , but not if you are using it .
It's funny , my Dad died from his Heart Issues back in the early eighties yet I remember him having a little bottle of liquid Magnesium " something " back then from his Heart Surgeon.
He'd be sat and suddenly you knew something was going on as his hand shot in his pocket for his little brown bottle and then he'd take a very inappropriate swig even before he got anything else.
I assume it had been used to have that effect on him , so it seems odd that there isn't more research or evidence on it working.
Or is it one of those " Old School " treatments that worked but they all pushed to one side and started to dismiss for " bigger and better " things.
Many of my circulation and neurology symptoms have improved with more Magnesium in my diet , so I assume it has also had an affect of keeping me out of an ambulance even if I was still stuck on my sofa .
I am hoping it can be managed enough to regain life! It does explain the sleeping for 18 out of 24 hours for 3-4 days in a fortnight, going back to bed for 4 hours having been up for just an hour, and / or 4 hour afternoon naps. All of which I was blaming on PMR and pred!!!
I do hope you are able to find a solution that works for you. You have my empathy.
Blimey - I've never been that bad! Just a bit tired next morning. OH has almost permanent a/f but not as bad and doesn't notice it - he's very unfit and lazy anyway but puts it down to the other problems. Those of us with paroxysmal a/f tend to notice it and complain about it it seems. So says the cardiologist at least.
We'd both love it if just supplements would get rid of the TN and ON , but the years of building up med combos , diet , supplements, exercises and working out my triggers have at least meant that these things haven't had me back in A and E for over five years , it's all the other stuff that is playing up now!!!
The magnesium is worth it though , by reducing some of the neuropathy pain involved in Fibro and the Peripheral neuropathy it isn't triggering as many Flares of Pain in my face as a rebound response and reduces the severity of the Pain when the vicious circle between TN, ON and GCA or vascular migraines occur.
The Magnesium combined with the blood thinning qualities of my daily garlic supplements have reduced the amount of bruising and does decrease the numbness in my fingers and toes.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GCA symptoms return, update on chest pain, Methotrexate added to Pred
Palpitations and flare up of PMR symptoms
Under treated PMR or Pred Side Effects
Cholesterol, pred and PMR?
PMR or not?
