AF Association
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Sorry, just having a moan

Sorry to inflict my grumbling on my fellow sufferers, but I feel a lot of you will understand. My cardiologist took me off Flecainide and substituted it with Bisoprolol 18 months ago. I was taking a 1.25mg dose daily, so the minimum dose. On check-ups I told him that my heart rate had lowered with Bisoprolol to about 45 bpm and it left me feeling tired and generally run down with several episodes of ectopic beats which resulted in dizzy spells. Last September he arranged for me to have a 24 hour Holter tape. I heard nothing, so assumed he was happy with the results. When I saw him in clinic last week he told me to stop taking Bisoprolol immediately as my night time heart rate went down to 34 bpm on the tape readings. My concern is that there was 9 months between me having the tape on and me seeing him again. Why was I not called back to clinic when he saw 34 bpm on the results? He has left me for 9 months taking a drug which, in his own words, gave me a dangerously low heart beat. I am disappointed in him. Sorry for the rant.

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I would certainly be disappointed as well to say the least. This is a good example for us all then not to assume all is ok following a monitor if we don't hear anything.

Did you say anything to your cardio at the time ? I know we can always think of something we should have said after the event !

Sandra

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Thank you for your reply. I saw his Registrar to begin with and once I told her, yet again, how poorly I was feeling on Bisoprolol she went to get the cardiologist. He didn't tell me the night time heart rate, just that is was dipping to dangerously low levels. The 34 bpm was mentioned in his letter. I am having another 24 hour tape on next month so I will write to the him asking for the results and will mention how concerned I am about being left for 9 months on dangerous tablets. Keep well. Maureen.

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I don't understand this '...took me off Flecainide and substituted it with Bisoprolol...'. Do you no longer have AF episodes or are you in permanent AF? What was the reasoning behind that change?

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He said it was because of my approaching age. I was 70 this February. I have PAF so the episodes have their own agenda as to when they start and stop. Thank you for your reply. Much appreciated. Maureen.

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Really strange as Flecainide is Rhythm control drug and Bisoprolol is a rate control drug.

I was taking both and was taken off Bisoprolol as I regularly had Bradycardia.

Pete

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Thanks for your reply. I was diagnosed with PAF 29 years ago, so in that time I have had a cocktail of drugs. Flecainide was all right but with my 70th birthday on the horizon he said he was changing me to Bisoprolol because of my approaching age. Happy days!

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Can’t understand the age thing, I have had PAF OVER 20years, couldn’t take Bisoprolol so have been on Flecainide for most of the time and I am 80yrs old. Are you in the UK?

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Yes, I live in Surrey. I was diagnosed 29 years ago with PAF and have had several drug cocktails in that time. I didn't question his decision to take me off Flecainide. He is the cardiologist, after all but other people who are older than me are still on it. I just wish the medics could all be on the same page! Thanks for your reply.

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I can understand your anger and frankly it is not good enough. With hindsight you should have checked the results of the Holter and this may have prompted a quicker change in your medication but I know we sometimes are reluctant to "bother" the busy doctors although I doubt it will happen again.

You may find this difficult, but I think you must make your Cardiologist aware of what has happened. Fortunately, the consequences were not as bad as they could have been, but clearly there is a communication issue which urgently needs to be addressed. If your hospital has a PALs facility, that might be the best route to take although I personally would speak politely to the cardiologist concerned.

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Thank you for taking the time to reply. I am due another 24 hour tape next month and I will be writing to him to ask for the results of that tape and also mentioning the 9 months wait on what he described as a dangerous drug was not acceptable. A friend of mine said perhaps he had not read the tape results until just before my appointment, which is worrying to say the least. Depending on his reaction to my letter I may well take the PALs route. Keep well. Maureen.

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Someone slipped up somewhere - that should have raised a flag when the monitor readout was reviewed. Your bad experience shows why we need to followup everything connected with our health - blood tests, the lot. I preach this constantly to my husband, to no avail!

Did he explain why Flecainide was being replaced by a beta blocker? I would be inclined to seek advice from my GP who may be able to access cardiology reports. Hope you get a better outcome.

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Thanks for your reply. He changed me to Bisoprolol because he thought Flecainide was no longer suitable because of my approaching age. I am having another 24 hour tape next month and, believe me, I shall be asking for those results and sending a letter voicing my concerns on being left 9 months on what he described as a dangerous drug. Scary. Hope you and your husband keep well. Maureen.

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Thank you Maureen. I take 2 x 100 mg Flecainide and i’m 74 - didn’t know age was a factor. A letter of concern may get to the bottom of it and stop it from happening to someone else. Hope the monitor results are OK.

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Many thanks. Keep well.

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H sarniacherie :-) I can appreciate your concerns .

There sees to be a big difference in the level and variety of treatment depending on where you live in spite of the NICE guidelines (of which some Doctors are seemingly unaware) .

I had to wait 6 months to attend an arrhythmia clinic in order to obtain a diagnosis of P-AF and be prescribed medication when all the time my condition was getting worse. I now know with a CHADSVAS score of 3 I was at an increased risk of having a stroke during those months.

The problem is with those of us with P-AF ,'making a fuss' can make us anxious and that is the last thing we need.

Try not to let something which has already happened and can't be changed upset you too much.

Sarnia what medication are you on now.

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Hello and thank you for your reply. The consultant told me to stop taking Bisoprolol immediately. I asked if he was going to prescribe me something else or if I could have a Bisoprolol as a 'Pill in Pocket', just in case and he said 'No' to both queries. I am not taking any heart medication, just 1 Rivaroxaban and 1 Ramipril daily. I am jotting down any episodes for when I see him again in December. I will admit to feeling much more energised now I am off a beta-blocker. My heart rate has increased to more normal levels and I don't have quite so many ectopic episodes. Fingers crossed it continues. Keep well.

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I too am 74 and have just started Flecainide. When I asked would I need to change from Dabigatran as I became older, I was advised they go by height and weight more than age.

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Hi Hylda

Fascinating. I would be interested in how they go by height and weight - does this mean they look at your BMI and base their findings on that? In which case a swift diet and loss of weight may affect your prescription quite radically?

Ian

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Think they go by if you are a frail older person. Life’s a permanent diet!

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I am amazed by this thread. I had a 7 day monitor and received a letter with results almost immediately although no dangerous results were seen. I used to take Propafenone (similar to Flecainide) but it was stopped when I had an ablation and has not been resumed although I am having frequent episodes again. I must ask why! Not that I want to take it again, I hated it......Is he not offering ablation because of your approaching age as well? Do let us know what happens next 😤

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Thanks for taking the time to reply. He didn't say this in clinic but in the letter I have just received he is mentioning a pacemaker if he is not happy with me when I see him in December. I have seen several medics over the years and had both 24 hour and 7 day tapes but it seems some doctors are efficient at sending results and others not so good. I am having another 24 hour tape on next month. I shall be asking for those results! Hope you keep well.

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Moan away - you have every right to do so! I think it's a total disgrace that you weren't told of your monitor results as soon as possible, considering the results weren't good! It sounds like there was a breakdown in the system. I think I would ring his secretary and ask how this could have happened. If she doesn't know ask her to find out or you will be asking PALS to investigate. Or you could just ask PALS to investigate for you anyway.

I'm fuming on your behalf.

Jean

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Oh thanks for your support. I am having another 24 hour tape on next month. I shall be writing to ask for those results and will mention the 9 month delay which kept me on what he described as a dangerous drug. According to his answer I may well contact PALS. Thanks and please keep well.

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I share your concern! Ridiculous! Rant entirely reasonable.At least you know now,but as you say ,luckily nothing occurred!

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Thank you for your reply. I shall not be thinking that no news is good news where test results are concerned, ever again! Keep well.

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You too,we all need to be vigilant it seems.I had an mri scan in March,as I had a mini stroke in November,and was sent to Stroke consultant as a follow up.He said all should be well now,as i am now anticoagulated but suggested an Mri as a precaution.He said he didnt expect to find anything sinister but if anything happened to me in future,would give them something to compare with.I never heard from him since...think I might give his secretary a call.....!!!

Have a good day xx

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Good idea. I will be checking everything from now on. Thanks for your reply. Keep well.

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My sister in law was a nurse. Her comment was beware of the 40%ers, 40% being the pass mark on most university degree courses.....

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Thats a very interesting thought! Think Ive met a few of them in my medical history,would explain a lot!

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Yes indeed. I have always thought it strange that someone can pass but have got 60% wrong. Scary.

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...I didn't know that. I wonder if the trainee GP I asked about the results of a cholesterol test was one of them . She said the result was 'too complicated to explain' so I never did get the results which sort of defeats the object of the exercise ...

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Exactly. No point in having tests and I would say, somewhat patronising.

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