Dragging me down: Hi everyone, just... - Atrial Fibrillati...

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Dragging me down

Tomred profile image
24 Replies

Hi everyone, just looking your thoughts , i take bisoprolol and multaq, my chadsvasc score is 0 but next may changes to 1, when first diagnosed was given bisop as pill in pocket , then upped to smaller 1.25mg daily along with multaq 2x400 per day, what are your thoughts on returning to bisoprol plus multaq as pills in pocket, after weaning off, and next year if offered anticoagulant i will take, im so tired of been tired , i think meds may be dragging me down slowly,and as they are not stopping weekly bouts of between 24 and 36 hrs, yes ,they do subdue it ,have asked ep about different meds but he adamant im on the best, i know no one is qualified to tell me, just your thoughts , and has anyone else done likewise. thanks for any replies in advance.

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Tomred profile image
Tomred
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24 Replies
Ossie7 profile image
Ossie7

Morning , I too am on dronedarone and was on bisoprolol but just weaned off the bisoprolol after my 3rd ablation . It is not advisable to stop these meds and take as a PIP , especially as your AF episodes are so frequent . Your drug combination is not working for you and you need to discuss other options with your EP . I know you say he is adamant you are on ‘the best ‘ but it’s only the best if it’s actually working . Have you discussed ablations , or had one ? If your EP is unwilling to offer other alternatives could you look for a second opinion , and maybe have an initial consultation privately to speed things up ? Good luck

Buffafly profile image
Buffafly

The only thing I can add to Ozzie’s summary is that if meds (prob bisoprolol) are making you feel worse you should be allowed to try an alternative. Also weekly bouts of 24 hrs plus must be very tiring and hardly rate as a success.

Ppiman profile image
Ppiman

Hi Tom

I can sympathise with being tired of being tired. I also have intractably poor sleep and have for years, so that adds to the feeling. It become a way of life, always trying to overcome the dragging down effects of it.

Can I ask what your average heart rate is during your episodes? My AF has become a lot more frequent these days occurring weekly or fortnightly, although waxing and waning. Each episode can last for several hours with lots of short bursts of AF and runs of ectopic beats added to the more continuous AF. I take only one 1.25mg bisoprolol daily but have been prescribed 50mg flecainide but I decided against it, fearful of side effects. My general heart rate tends to be low and I have been told I have bradycardia at times.

I cope well enough with the AF symptoms as my heart rate often stays well below 150 and often average 90-110bpm. Yesterday during a walk, I did have to rest as it topped 180bpm or so. I don't know whether these prolonged and more frequent episodes do any harm or not - I have been told not. I am awaiting an ablation.

Life, eh?

Steve

Tomred profile image
Tomred in reply toPpiman

Hi Ppiman, my heartrate fluctuates between 60-70 to around 110, even when not in af i feel like im walking in sand, hope you dont mind me asking, does the Ppi stand for proton pump inhibtor, lol.

Ppiman profile image
Ppiman in reply toTomred

It does. I tried a few names when I signed up but all had been taken so, somehow, I went for that as I rely on those things to keep my stomach acid under control! My heart rate goes to 50 or less most days and then, like yours unless I have AF.

I expect many of us are in the same boat as you are. "Dragging down" is a fair way to explain the feeling at times. I think Multaq is one of a few possible choices, but all of them come with a cost. Your AF bouts are long and surely will take it out of you. Mine are lengthening and becoming more frequent, but at a lower rate. I would ask about starting a DOAC if I were you with that level of AF.

Steve

Tomred profile image
Tomred in reply toPpiman

I have asked ep for a/coag but he says no, until i reach 65 next year, i mostly keep thinking of bisoprolol tiring me but you may be right about multaq.

Lewis1234 profile image
Lewis1234 in reply toTomred

I also suggest getting on anticoagulants, I am 60 with similar PAF frequency to you, otherwise very healthy, chadvasc 0, till I had a TIA 3 weeks ago, it was a frightening experience, no balance at all and my eyes uncontrollably jumping around all over the place, I feel incredibly lucky that it passed in hospital with no detectable permanent damage, my MRI showed I had had one before that I had had no idea about! So now very happily on Apixaban twice a day… I would question why wait another year? I have an ablation booked in for Dec 2nd, that appointment came in a week before I had the TIA.

Tomred profile image
Tomred in reply toLewis1234

Hi, Lewis, sorry to hear you had a TIA, must have been a terrible experience, i hope you fully recover, i have asked my ep for and anti -coagulant, he says not until im 65 next year, so what can i do if he wont prescribe them , maybe try to get second opinion , but to get an appointment must be through my gp ,which is near impossible where i live.

Lewis1234 profile image
Lewis1234 in reply toTomred

Hi, yes it was awful but feel very lucky it has had no lasting impact at all! Phew. My GP and my EP/Consultant always gave me the choice of anticoagulant or not, seems that’s not the case for you, odd how everyone’s experience is different. You may very well be low risk, it’s just that we thought I was but I wasn’t… best of luck with everything.

Ppiman profile image
Ppiman in reply toTomred

I wonder myself whether the side effects are to do with the heart rather than the drug but can't be sure as these things are hard to prove by stopping the drug. In my case, I have a slow heartbeat and adding in even 1.25mg bisoprolol lowers it a bit further causing bradycardia. I used to think bradycardia meant a resting rate of lower than 60bpm (which I have at times each day), but now I rather think it just means "slower than the body "requires" leading not only to tiredness in my case but an odd "distancing" feeling.

Steve

Thomas45 profile image
Thomas45

I was never prescribed a beta blocker as I am also asthmatic . Bisoprolol, in particular, can cause tiredness. There are other beta blockers which can be tried.Multaq is dronedarone, as I understand it not dissimilar to Amiodarone which I did take for 10 months. Amiodarone didn't work to reduce my episodes or their severity significantly. After 10 months I was taken off it, and started on Flecainide which worked for 12 years on a daily dose. I was then found to be in persistent though asymptomatic AF, so came of Flecainide. As my heart rate is in the normal range of 60-100bom, I take only an anticoagulant for AF. That's not an option for you as your AF is symptomatic.

Multaq has a known side effect of lethargy and feeling tired.

Your combination of drugs does not appear to be helping you.

Throughout your previous posts you appear to have a theme of reducing medication. What I believe is more important is finding the right medication for you.

If I was in your situation, I would ask for a different beta blocker. There are several so find one that works better for you.

If your side effects continue just as bad, after you've tried all beta blockers, then look to changing dronedarone.

What do I think to pill in the pocket, for both your tablets? I think it's a daft idea.

Tomred profile image
Tomred in reply toThomas45

Thanks Thomas, i have asked my ep about different meds and tells me i am on the best there is,if it was a case that no damage was been done to the heart and i was anti- coagulated i cant see why pill in pocket wouldnt suffice, but i think af episodes especially prolonged bouts can damage heart.

Thomas45 profile image
Thomas45 in reply toTomred

Has your EP had AF himself? were your drugs the drugs which helped him? Doesn't he know that we all have different bodies, some may react to one drug, others to another.Once when I was in permanent though asymptomatic AF I had to have an emergency operation to remove my appendix. I take an anticoagulant , Warfarin, daily. The surgeon knew of my AF. First I was given vitamin K intravenously, so as to raise the "clotability" of my blood, then I was wheeled into the operating theatre at 2.30 on a Sunday morning.

When they woke me up, 3 hours after the operation had ended, my heart rate was 190 bpm.

I was kept in hospital 3 extra days for my heart rate to fall below 80bpm. During that time, a well-meaning doctor prescribed Bisoprolol for me, despite me telling him I was asthmatic.

7 weeks later I started with urticaria, aka hives. It was a Christmas Eve

The rashes were very painful. I made an appointment to see a skin specialist. She asked me what medication I was on. The only "new to me" medication was Bisoprolol, 2.5mg. I was weaned off it. During the weaning I had a very sudden exacerbation of asthma. It happened while I was in a pharmacy. Not only couldn't I breathe properly but I also had chest pains. An ambulance was called and I was admitted to hospital, where I was for 3 days.

It took 4 years of daily antihistamines to rid myself of urticaria, a known very rare side effect of Bisoprolol

To your EP, Bisoprolol might be the best there is, for me it could have led to death.

It's quite evident from your posts that your medication is not working as well as it should, so if in your shoes, I would be looking for alternative beta blockers, such as nebivolol. There are several others.

Buffafly profile image
Buffafly in reply toThomas45

Or EP?

pusillanimous profile image
pusillanimous in reply toThomas45

Asthmatics and Beta Blockers seems to be a contraversial subject. I have asked 3 Cardiologists if I should stop taking Bisoprolol - I take 1.25mg as needed. Each one has said that the Cardio specific BBs do not affect Asthma, their opinion being that they do more good than harm - it is the broad spectrum BBs that should be avoided. I have never had an exacerbation of my Asthma when I have taken one. This is an extract from a report from a Repiratory site study. 'There were no published reports of cardioselective β1-blockers causing asthma death. Observational data suggest that cardioselective β1-blocker use is not associated with increased asthma exacerbations. We found only one report of an asthma death potentially caused by cardioselective β1-blockers in a patient with asthma in a search of VigiBase. The reluctance to use cardioselective β1-blockers in people with asthma is not supported by this evidence.'. So with this and the opinions of 3 highly experienced Cardiologists, I continue to take a Biso if my HR goes into the 90s at rest. I have PAV, and the annual echo has shown no change in 6 years, and no progression of asthma and possible associated COPD.I'm 81 so I'm prepared to take my chances !

Thomas45 profile image
Thomas45 in reply topusillanimous

That may be the case. However exacerbation of asthma is known as a very rare side effect of bisoprolol. Very rare means between 1 and 9 people out of every 10,000 who take bisoprolol, and who are asthmatic, will have an exacerbation of asthma.

Vonnegut profile image
Vonnegut

If an echocardiogram shows your heart is in good order you might be able to take Flecainide which has worked well for many of us. Now that I take it regularly, it has virtually put an end to episodes.

Tomred profile image
Tomred

I have specifically asked ep for flecainide , he says no because there are too many side effects, lots of people on here seem to take flec.

Snowgirl65 profile image
Snowgirl65

It sounds like you're having a bad reaction to your meds. I had taken Verapamil for a while that left me feeling like a living zombie -- I couldn't concentrate on work (during my career days) and just dragged myself around. I felt just horrible. I was finally taken off that drug after changing EPs and the difference was astounding. Please ask questions -- see if you can be switched. Best of luck to you.

Tomred profile image
Tomred in reply toSnowgirl65

Hi Snowgirl, thanks , what drug were you changed too.

Snowgirl65 profile image
Snowgirl65

I was changed to Digoxin for a while -- which was fine, but now I'm just on Metoprolol.

Buffafly profile image
Buffafly

I would seriously think about changing EP if you can - I was told by a cardiologist that bisoprolol was the best until I had a severe asthma attack 🙄

babs1234 profile image
babs1234

I take Bisoprolol now as a PIP. And always take just before exercise.

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TracyAdminPartner

Thank you for your message, I am pleased so many members have offered their support and advice based upon their own experiences. If you would like any additional help, please contact our Patient Services Team by viewing our contact form: heartrhythmalliance.org/afa...

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