Update from Marilyn and Caution (not to attribute all symptoms to PMR and / or Pred.

[Marilyn1959]

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

[DorsetLady PMRGCAuk volunteer]

Glad to hear you are on the way to being sorted! And yes, we are apt to blame everything on our existing illnesses.

A timely reminder, thank you - and take care 💐

[Hidden]

Glad you have found out what was going on.. Hopefully you will feel better once treated. 🌻

[Jackoh]

Well don’t understand the final diagnosis but glad you’re home and are being treated. As you say a timely reminder not blame everything on just PMR.

[PMRpro Ambassador]

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"

NOT what I asked ...

[Yellowbluebell in reply to PMRpro]

Its the standard blame pred for everything no matter what unfortunately.

[Marilyn1959 in reply to Yellowbluebell]

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.

[Yellowbluebell in reply to Marilyn1959]

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

[Marilyn1959 in reply to Yellowbluebell]

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.

[Yellowbluebell in reply to Marilyn1959]

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

[Marilyn1959 in reply to Yellowbluebell]

Totally agree. Hopefully this post will prompt members to act.

[Megams in reply to PMRpro]

~Ditto PMRpro - don't you just detest that comment.

A convenient way to close that part of conversation down except I add my thoughts instantly & politely.

[SheffieldJane]

Glad you are home. Thanks for the good advice. Really glad that you are in safe hands!

[Hidden]

So glad you are ok all things considering and thank you so much for documenting your symptoms. Hoping you make a full recovery!

[Yellowbluebell]

I think the basic thing a lot of people do is blame pred for everything and then pmr!! Glad you are honexx

[Blearyeyed]

Preaching to the Cardio Choir sister!

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.

Hugs xxx

[PMRpro Ambassador in reply to Blearyeyed]

"let's hope that now they have found the problems we will be live and kicking with a healthy heart again soon"

Unfortunately - like PMR there is no cure for atrial fibrillation. Even ablation does not work reliably so it is management ...

[Blearyeyed in reply to PMRpro]

Yes , it is a matter of management , I should have said live and kicking with a heart that will keep us going ! xxx

[PMRpro Ambassador in reply to Blearyeyed]

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.

[Blearyeyed in reply to PMRpro]

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 !😂😂😂

There's always a silver lining 😋

[Marilyn1959 in reply to Blearyeyed]

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!

[Blearyeyed in reply to Marilyn1959]

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 !😋😂😂😂😘😘😘

[Marilyn1959 in reply to Blearyeyed]

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.

[polymy in reply to PMRpro]

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.

[PMRpro Ambassador in reply to polymy]

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.

[Marilyn1959 in reply to polymy]

What does intolerance of beta blockers look / feel like?

[Bloomsbury49]

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.

[PMRpro Ambassador in reply to Bloomsbury49]

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.

[Bloomsbury49 in reply to PMRpro]

Thanks - will look into magnesium.

I believe a pacemaker is the next step - will await next cardiology appointment! Best wishes!

[Marilyn1959 in reply to PMRpro]

Does the magnesium lower or increase heart rate?

[PMRpro Ambassador in reply to Marilyn1959]

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:

livingwithatrialfibrillatio...

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.

[Hidden in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Hidden]

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

[Hidden in reply to PMRpro]

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?

[PMRpro Ambassador in reply to Hidden]

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!

[Hidden in reply to PMRpro]

Very interesting!

[KellyInTexas in reply to PMRpro]

What anticoagulation medication are you on, if you don’t mind me asking ? Rivaroxaban? For a mitral valve replacement it would be warfarin, correct?

[PMRpro Ambassador in reply to KellyInTexas]

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.

[Marilyn1959 in reply to PMRpro]

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?

[PMRpro Ambassador in reply to Marilyn1959]

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????

[Marilyn1959 in reply to PMRpro]

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?

[PMRpro Ambassador in reply to Marilyn1959]

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!!

[Blearyeyed in reply to PMRpro]

Thanks for the tip , where do you buy that ?

[PMRpro Ambassador in reply to Blearyeyed]

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.

[Blearyeyed in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Blearyeyed]

That was what I assumed - and suspect maybe more magnesium in my diet/supplements might be useful!

[Blearyeyed in reply to PMRpro]

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 .

[Marilyn1959 in reply to Bloomsbury49]

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.

[PMRpro Ambassador in reply to Marilyn1959]

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.

[Blearyeyed]

If only !!

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.

Every little helps .

[PMRpro Ambassador]

anti-TNFs are specifically warned against in GCA and PMR/

[PMRpro Ambassador]

I was merely answering your comment about it not doing what Actemra does - it works on a different pathway that is rarely involved in PMR.

[HeronNS]

If you're at 5 mg pred and your PMR symptoms are reasonably under control I'd hope that any and all specialists will allow you to do your own taper.