Just a Warning to Everyone

[jeanjeannie50]

I don't want to scare anyone, but this is a true story.

I have an ex male work colleague who I'd worked and laughed alongside for years, our whole office was like a big family. About 4 years ago, aged 60 he was told by his GP that he had AF and put him on beta blockers and aspirin! I explained to him that he should be on an anticoagulant and that aspirin was not recommended for AF now. As he didn't have any symptoms of AF, he decided he'd go with what the doctor had told him and who could blame him as a doctor should know best. The beta blockers didn't bother him much, just made him a little more breathless when he did long hilly walks with his fellow cricket playing buddies (had been a very active, sport playing man all his life).

Around last November I was devastated to hear that he had had a blood clot in his brain, been operated on and in hospital for many months. He is now wheelchair bound with an extremely poor memory and needs 24hour care by his wife.

As I have said this is just a warning to make sure you are on anticoagulants and not relying on aspirin to prevent clots.

Jean

[CDreamer]

How sad for your colleague. A timely warning as to what can happen without ACs.

[jeanjeannie50 in reply to CDreamer]

When I first started out on my AF journey 12 years ago. I didn't want to take any tablets and once I'd been AF free for a few months would take myself off them, my warfarin too! I'd been brought up on a farm with a father who believed in natural healing and was into healthy eating long before it became fashionable. Tablets to my mind then were poison!

With what I've learnt on this forum over the last few years I can't believe how foolish I was! There comes a time in life, especially with regards to AF, when we really have to give in and take them or suffer the consequences.

[CDreamer in reply to jeanjeannie50]

Jean you and I both. I have reviewed my stance on meds - I had to for AF and MG!

I do think it is this risk:benefit assessment which has helped me decide, along with all of the posts from others like yourself and the debates.

These days you will find me firmly on the AC side!

[RexH in reply to jeanjeannie50]

Hi Jean,

Thankyou for the good advice. I had an ablation last June, and very slow recovery, but not to bad now. Also have type 1 Diabetes. Like you I have hated taking medication long term. As a retired industrial chemist, I tend to analyse to much, I cut my predaxa back to one a day as I assumed this would be enough, if not going into AF. So I might have to rethink this. Also how are you going now, as a few weeks ago things did not sound do good, and you thought you might get some one on to help care for your garden. Hope all is well with you .

[jeanjeannie50 in reply to RexH]

Hi Rex

Yes, one thing I certainly won't scrimp on now is my anticoagulants and I'm glad to hear you're rethinking your Predaxa dose. It's just not worth the risk.

At the moment I'm really well and have been AF free for 3 weeks, but for years I've never gone more than 6 weeks without having an attack. I often wonder why my AF appears so regularly and wonder if other people get it in regular cycles too. Must put a post on here asking about that sometime.

I'm glad to hear you're ok now after your ablation, long may that continue.

Jean

[jennydog]

Hi Jean. Worryingly, Sambaqui who wrote the adjacent post to this one, was also prescribed aspirin so the problem is on-going.

I was also prescribed aspirin after being taken to hospital during a severe first AF episode. I know now that it was useless but it did cause a lot of trouble with my stomach. I wasn't far short of an ulcer. An occasional dose for a headache was fine, but a daily dose caused a problem.

It's desperately sad to hear about your friend but it's a timely warning for us all.

[jeanjeannie50 in reply to jennydog]

Yes, like you I was prescribed aspirin after my first AF attack and it made my stomach sore and I had to stop it. Warfarin did the same until I started taking it in the morning instead of at night. I always take it mid breakfast too. So many things we have to learn to be comfortable with AF and our medication.

[mrsg46]

Thanks for posting this Jean, although a very sad story it's good to remind people why some of us bang on about the need for anticoagulation not aspirin, and to challenge any GP who still thinks it's ok to prescribe the latter.

[jeanjeannie50 in reply to mrsg46]

You would think that all GP's would have had some form of notification about Aspirin and AF wouldn't you! Surely they must get medication warnings? My colleague had also been warned about his blood pressure level and told to change his lifestyle.

[meadfoot]

Well said Jean, a salutary tale.

[jeanjeannie50]

Just looked at an email I sent to another colleague and realised I should also have said in my post that my colleague had been to the optician a few days before the event as he felt his eyes and head ached. When examined they told him to go straight to A+E, but when he arrived there they could find nothing wrong with him and he went home. A few evenings later he felt so ill, he rang for an ambulance himself and was barely conscious when they arrived, he'd had a massive brain haemorrhage.

Jean

[Hidden in reply to jeanjeannie50]

Hi Jean,

Hope you are keeping well. A salutary lesson - sadly. Twice I've had an Optician give me health warnings. Once was after I'd been diagnosed with AF and he picked up heart issues but couldn't identify what exactly. I told him about AF and he was most relieved that it was being treated and was under control.

The second was in early 2014 when I went to an optician for my 2 yearly eye check. He wrote a letter to my GP stating my blood sugar levels were very high and until it was sorted he was refusing to prescribe a new spectacle prescription.

GP did the Hba1c blood test and found I was borderline 'Prediabetic'.

GP did nothing, but I did -put the fear of hell in me and (cold turkey) I cut out all added sugar, and cut out as much other sugary stuff as possible and got my blood sugar down to a normal level. I bought myself a blood sugar testing machine and twice a year at random I do a series of blood tests to monitor things. Sadly my father had mature onset diabetes, which eventually killed him.

So basically, guys and gals out there - ignore a health warning from your Optician at your peril.

John

[jeanjeannie50 in reply to Hidden]

Thanks for responding John. I've been ignoring my need for an eye check, but after all you've said I'll certainly book one now.

Jean

[RiderontheStorm]

Jean, I'm sitting here in shock after reading that but after what I have been through I know Doctor recommendations are not always correct and we suffer the worst for it. Personal due diligence is often called for as I have found out.

[jeanjeannie50 in reply to RiderontheStorm]

Yes, we have to be constantly fighting our corner. This forum is great for getting helpful tips.

[KathFrances]

Thanks for all these comments - after reading them, I've just taken my first Rivaroxaban! I've been scared to take it after reading about all the possible side effects, plus the warnings that you mustn't stop taking it, so it's forever. I've never been on a long term NHS drug before, but with AF, I can see it's time to bite the bullet and just do it. Definitely don't want a stroke.

[jeanjeannie50 in reply to KathFrances]

Good to hear Kath. No, you definitely don't want a stroke. I helped to run a nursing home and after all that experience of seeing what a stroke can do I can honestly say I'd rather not be around than suffer the effects of one. Not able to move, speak or eat - just looking with bewildered eyes trying to make sense of what they can see, such a dreadful way to end up! So make sure you take those Rivaroxaban each day.

Best wishes

Jean

[Maureens46 in reply to jeanjeannie50]

Having read jeanjeanie's msad and frightening post I feel somewhat trapped. Having been diagnosed with AF in late Feb. I was prescribed Bisopoprol 5mg and Asprin. Since then I have had 24 hrs monitor and Echocardio. I have no idea when I will get to see a Cardiologist for my first visit and am increasingly alarmed at the thought that Asprin is ineffective in preventing stroke. Should I stop taking it? Bit of a dilemma...

[jeanjeannie50 in reply to Maureens46]

Maureen if you are quite young they don't generally put you on anticoagulants, but I think if you are over 60 with AF you go straight on to them. I believe your GP can assess whether you should take them now.

Jean

[OldSarge]

Wow. I am presently on aspirin alone due to bleeding issues with thinners. I was on Eliquis for two years. Maybe I had better ask my doc about it. Zarelto caused me to bleed internally, and two years ago due to a botched surgery I bled 13 pints before I was stopped. I was in intensive care 5 days. At that time I was on Eliquis, Plavix, and an aspirin a day. Blood was really thin. It scared me away from Eliquis and Plavix (I was on Plavix for corotoid stents and doc says after a year not needed), so I went to aspirin alone. I did not have any issues with the Eliquis until the surgery that nearly killed me. I am thinking I should get back on it as aspirin alone is not enough as you all seem to think.

[jeanjeannie50 in reply to OldSarge]

Morning Sarge, lovely to hear from you. I'm sorry to hear of all you've been through.

I guess you know that anticoagulants don't actually thin the blood, they just prevent it from clotting too quickly. The blood stays at it's consistency and that is not altered at all with anticoagulants.

Did you see the post by Steve, either yesterday or the day before with Dr Sanjay Gupta talking about the risks with AF and how anticoagulants help prevent strokes? That said if you have had a bleed your situation may be very different to others with AF.

If I were you I would seek advice from a doctor who specialises in heart rhythms and not be influenced on what is taken by others on this site.

Best wishes

Jean

[OldSarge in reply to jeanjeannie50]

Thank you. I will be inquiring about whether I should get back on them based on my risk factors, as I have already had a major bleed, albeit that was due to surgon error. My Afib seems to react well to Flecanide for controlling it, but I do not know the risk factors for stroke given that I seem to be under control. I am not smart enough or informed enough to know this on my own. Thanks to all for the replies, they do help.