AF Association
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How many medications do you take (heart related only)?

This question is prompted by a forthcoming visit to the GP to discuss blood pressure medication at the request of the hospital cardiologist. I have permanent AF and underwent an aortic valve replacement for a congenital condition 6 years ago. I swim 3 times a week, work part time, lead a reasonably active life and feel well.

Currently I take Levothyroxine (because Amiodarone ruined my thyroid), Bisoprolol, Dogoxin and Rivaroxaban.

I have a long list of objections to taking any more medication, starting with the way they have attempted to monitor my BP, through the effects of a diuretic (I already pass water a lot). All in all, it just seems plain wrong to hit my body with yet more chemicals. Last year I lost 20lb by my own efforts. I would really prefer to do something for myself, if necessary.

It is of course my decision whether or not to take medical advice but has anyone had a similar discussion with healthcare professionals? When is enough, enough?

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Only AntiCoagulants. BUT my BP is low.

In general I tend to agree about taking more meds - unless it would be life threatening to not, or if it would improve your QOL. Perhaps ask more as to the reasoning for the suggestion?

Have you had an echocardiogram recently? I could see a good reason to take a diuretic if there were symptoms of water retention or heart failure.

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I have a yearly echo, last one 3 months ago. Heart failure situation is described as borderline but I have no symptoms of water retention. Quite the opposite! Cardiologist said to prescribe further medication if systolic BP was more than 130.

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The problem is it’s quite difficult to get an accurate reading if you have AF and most folk’s BP rises when taken at the surgery anyway! I’m not medically trained, but 130 for people of a “certain” age is sometimes difficult to achieve, hopefully your GP will take account of this especially if prompted by you....😉

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Totally understand where you are coming from Mrspat, but high blood pressure is supposed to be one of the conditions which can cause AF. Bisoprolol is used to reduce blood pressure, so maybe the dose could be reviewed.....if that does not appeal, then possibly an alternative beta-blocker could be considered. It’s good to hear that you feel well and active.

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Usually I would say take what is advised BUT to be honest there are some things I have refused. Any calcium channel blockers for example as these make my legs swell up. I also took myself off statins a couple of years ago due to leg pain and my GP accepts that I am supposedly intelligent enough to make my own mind up about these things. I am therefore the last person to advise others since I don't take my own advice. lol.

This BP issue drives me mad as originally they told me they wanted my BP below 140/90 and when I got there they moved the goal posts to 130/80. Now they seem to be working to 125/70. Anything lower and I get light headed standing up ! Surely if we understand the facts of an issue we can make our own minds up.

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While I accept that goalposts can move, I am old enough to remember when 150/90 was considered acceptable. I am all too aware of how difficult it is to get a BP reading for people with AF. My resting heart rate (measured by Fitbit) is normally 55-70.

My AF, as I understand it, is caused by the heart problems associated with my congenital condition.

My medications are checked by yearly blood tests. I have assumed that the levels are satisfactory as no one has told me otherwise. But I will ask GP to confirm when I see her. One of my reservations about taking BP medication is that there is no test other than the BP measurement itself.

If they were talking about preventing development of heart failure, I might be more co-operative.

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I have AF and Heart Failure since 2014. Meds for AF are Nebivolol 5mg (recently changed from Bisoprolol causing to many side effects after 4 years on it) Diltiazem 180mg and Rivaroxaban. Meds for Heart Failure are Ramipril. I used to he on daily Furosemide for HF (when first had HF I had retained 2 stone of fluid and was hospitilised for 12 days to sort that and very high HR) for about the first 6 months but as there was little or no fluid retention I stopped these and have them now as stand to take when fluid occurs. I find that Furosemide does make my HR go up.

My Bp is also irratic but on average it is 130/85 I and accept this as okay. 6 months ago my GP wanted to put me on statins, my cholestral levels are nomal to just over some times - but I declined these and my HF nurse agreed with this. I feel at the moment all my readings are resonable and I do not want to increase my medication. My HR has never got down to what the medics want 60/70 normally around 80 to 90, They have increased the Biso to 7.5mg but that has bad side effects and also the same with Ramipril, so returned to lower doses. I feel all is reasonably under control not perfect but will do for me - but really donn't want more medication at the moment.

Cassie

PS. The Nebivolol has been so much better for me no breathlessness and actually feel less tired on it. I asked to be prescribed this drug but it was a battle to get it.

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The daily mail had an article on Monday the 14th (page 34) about how much medication older people were taking and how much of it was really needed and also the adverse effects they are having on our health, definitely worth a read I know you cant always believe all you read in the papers but I found it very interesting at the end of the day all these pharmaceutical companies are interested in is making money.

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If you are talking about treating hypertension with drugs then personally I would not resist. I have a friend seemingly in the best of health and very active who had a devastating stroke due to undiagnosed hypertension. Other things like statins I think can be left to the individual to decide.

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Bisoprolol, Flecanide (twice a day), and Apixaban (twice a day)

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Hi,

I had a Aortic Valve replacement 7 years ago, which was the start of my A.F. which does not bother me. Now have a leaking Mitral Valve, waiting for action from the Cardiologist

I am also prepared to question any new medication, and say no , it is my body,

Previously on Amiodarone....Stopped taking ....terrible side affects

Also previously on Ramipril..... Stopped taking , more bad side affects

Also previously on Amlodipine, which was fine, Stopped by the Cardiologist last year

My heart has a E.F of 35% which is the Heart Muscle, which is not pumping to well,

So now taking 1.25 Bisoprolol, last thing at night, tried stronger, but did not feel well

Also now taking 16 mg Candesartan. no problems

Finally convinced to start Edoxaban last month, Offered me Warfarin which i refused

Gone onto Edoxaban because of Fear of a stroke with the leaking Mitral Valve leaking

So far so good

Take Turmeric and garlic and Milled Flax Seed

Just completed 8 weeks for Prostrate Cancer, no problems

Lead a full life , i am very positive about life

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Apixaban has the best safety profile...especially for GI and brain bleeds. Tumeric and garlic are blood thinners so mention to doc. I take 32mg candesarten, no problems. Also, I take magnesium. 600mg per day. Also, you can mix flaxseed with chia seed for a HUGE boost to health. Soon enough they will be coming out with a new NOAC for people with artificial heart valves...stay tuned. I could never tolerate the beta blockers myself. be well!!!

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You may find it interesting to read 'The Sinatra Solution: Metabolic Cardiology' by Stephen T Sinatra. He is a caridiologist who talks about strengthening the heart using CoQ10, magnesium and L-carnitine, amongst others. Best to start with the minimum amount, and read the book and check with your doctor first.

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Only bisopralol as I had already been on Warfarin for 6 years due to multiple bilateral pulmonary embolisms so a anticoagulant was already in place. I was only diagnosed with AF on April 30th and have yet to have tests etc so my meds may change.

I have been taking Enalapril plus a diuretic for years for high blood pressure.

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I understand where you are coming from Mrspat. All pills appear to have some side effects and it seems obvious that the more we take of them, then the stronger the side effects can be. I've refused to take statins (my cholesterol is not high) and am on Flecainide, Metoprolol, Warfarin and like you Levothyroxine for damage to thyroid caused by Amiodarone.

Jean

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How long did you take Amiodarone? I started with 800 mg for ten days and now 200mg last ten days- I want off - but did not well with Rhythmal - that one was tried cuz I felt Flecanide made me just wore out. On Amiodarone since second ablation five weeks ago

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Do you know I really can't remember the dose now as it was about 7 years ago. How have you been since your ablation?

Jean

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Now five weeks post ablation my BP has stabilized, HR still high (for me) remain in NSR, not as breathless . Tire more easily but feeling better. I know I need to stay on medication awhile after my ablation- just fearful of staying on the Amiodarone till my EP follow up appt in June ( another month). Planning to call and talk to EP nurse.

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I take Losartin, Metoprolol 25mg twice daily, anticoagulant and Amiodarone 200

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I think I took it in total for about a year as I was prescribed it twice.

Jean

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Hi Mrs Pat. Check your PM. Want to share my story with you but have posted similar info frequently and don't want to bore other members who have heard all this info from me before.

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Disopramide twice daily and 5mg Bisoporal together with anticoags. Would love to get rid of them all!

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Hi yes sadly I am on losartan, Doxozosin, Edoxaban, and I was on bisoprolol until the cardiologist wrote a letter to my gp changing it to Sotalol after I had phone his secretary to say I'd be rushed to resus AGAIN with SVT and AF. I asked for an appointmentioned to see cardiology to discuss an ablation as recommended by resus doc but was told no he didn't think I needed to be seen. I feel so cross that he just makes the decision to change the drugs without speakingto me when I have said for months that the side effects are causing a deterioration in my quality of life. I also have 4.5cm TAA that is being government strained by the arythmias. Sotalol should be administered in a hospital setting whilst on a monitor according to the Internet info. X

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I sugggest you take a good multi-vitamin-and-mineral from a health food shop for at least three months, and look very carefully at your diet. Blood pressure can be controlled by diet, and that would solve your problems. Cutting down drastically on sugar and processed foods, including margarine, and decreasing your meat intake could be a good starting point.

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Bisoprolol 7.5mg

Ramipril 5mg

Eplerenone 25mg

Furosemide 20mg

Apixaban 10mg

I was diagnosed with heart failure last August and an MRI shows an EF of 27% (with some low level mitral valve leakage). The cause is still under investigation. I gave up on the NHS because of the slow investigation (no problem with the quality) but, having gone private in March, the investigation is still slow.

I considered myself a very healthy 63 year old prior to diagnosis although I had been on medication for hypertension for a year or so, A runny nose is a presumed side effect of the above medication - and cold fingertips in cold weather - but these are minor side-effects compared to what other experience. However, I do get exhausted very easily and become dizzy when getting off the floor (B.P. 110/60). I occasionally experience palpitations; particularly induced by what I would previously have called very trivial levels of stress.. Paroxysmal atrial fibrillation has been identified on my ECG. ECG trace persistently shows two sinus pulses although arterial pulse rate measurement only appears to record one. I assume the cause of my problems to be sinus-related.

Since the cause has not yet been identified, I consider it prudent to follow advice and keep on the above medications but I do hope a cause can be determined and some treatment offered to allow me to cut down on the above medications.

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Interesting - my own gut feeling in my different circumstances is not to take medication unless the cause of a problem has been fully and properly explored.

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Since I had already suffered damage it seemed to me that lowering my heart rate and blood pressure was a good thing to do to mitigate the risk of further damage pending investigation of the root cause. The apixaban to reduce the risk of blood clotting due to low flow and furosemide because of fluid on the lungs leading to difficulty breathing also seemed to be the right thing to do. Had I experienced any significant side effects, this may have changed my opinion.

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I have had af for approx 15 years. I have had a string of medication,each with bad side effects,so ended up not taking anything

The latest medication was levothyroxine ,approx 2 years ago. I am border line so was given 25mg to take. Every time I took 25mg I went into 4 hours later.Since stopping taking it my health has improved and no more bad incidents, but to try and tell specialists I came up against brick walls,they don’t believe that you don’t fit into their “little boxes” they don’t seem to have open minds!

Probably doesn’t help you,but you may find it interesting

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An update on this. I saw my lovely GP this morning. After a discussion about how guidelines are only guidelines and how everyone is an individual, she nevertheless wanted to prescribe an ACE inhibitor. She assured me it is not a diuretic. This is on the basis that my average systolic BP is over 130, which is what the cardiologist wants me to achieve. Even the cardiologist described my BP as borderline. GP described 130 as very strict. We also had a discussion about monitoring BP for people with AF.

I have declined to take any additional medication as I feel very well. Even the GP commented that I look well. Having been brought up to ask “how high” if a doctor says “jump” this feels almost criminal. We did agree two things: my annual medication review/blood test, and particularly the digoxin levels, is brought forward three months and I have agreed to review the salt levels in my diet.

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