Flecainide

Thank you for everyone for taking time to reply to my previous post . Was trying to clarify a problem I have with my GP . I have PAF , at the moment not too frequently . I have flecainide prescribed as a pill in pocket , which works well . The concern is my GP will only allow one dose at a time , leaving me feeling very vunerable at w/e especially with bankholidays . His reason ....he wants to know how often I need to use the drug . On second asking .....He said it's a very dangerous drug and easily overdosed . I was not impressed but ine does not argue with this guy . I don't have an Ep , are there any in Devon ? Saw a Cardiologist once and was refered back to GP . So he is my "go to " medic . When I last used the flecainide , it took 5 days to get the replacement , hence my concern . Thank you for listening xxxxxxx

Jean S.

25 Replies

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  • That is just so wrong Jean. The max dose of flecainide is 300 mg in any 24 hour period and for the brief period I was on it I was told to take 300mg if AF started. That said and in possible defence of your GP this drug should only be prescribed in the first instance by consultant level although he does seem to be overreaching his brief.

    Re EPs in Devon yes there are two at R D and E. Matt Lovell and Steve Podds both very nice guys plus an arrhythmia nurse Lynne Bastable so why not ask your GP for referral there. IF he is unable to adequately treat you that is your right. It doesn't sound like you are currently getting the best treatment from anybody.

    Which part of Devon are you by the way? I'm in Barnstaple. Message me if you want any more info or chat.

    Bob

  • Bob, my AF nurse told me that you can only take 300mg in one day if you are using it as a PIP. A few weeks ago my EP flatly refused to let me take an extra dose on top of my daily 2 x 100mg if I went into AF and stressed how dangerous the drug can be.

    Jean

  • Thank you Jean, that is very good to know as I am on the same daily dose.

  • Thank you Bob for relying , I didn't realise Matt Lovell was an EP ......I had researched him but no where was Ep mentioned . I saw him once for diagnosis and treatment plan . No follow up or further appointment mentioned . He was going to write to me with further information , which never materialised . I rang his secretary who agreed to send me copy of GP letter and contact number for arrhythmia nurse , that didn't appear either . Just unlucky I guess that it went Pete Tong ! I will phone again now I have a name , speak to Lynne and take it from there . I live 5 miles north of Okehampton , very rural with sheep and cattle for neighbours . Jean S x

  • Sorry for my ignorance ,new on here but what is an EP ?

  • Hi Jean, Yes there are three EP's that I know of in Devon. Two at Derriford and one at Exeter. Remember Gloria at our Nosh and Natter? Well she had a cryoablation (spelling) a few days ago at Exeter hospital and I had my three RF ablations carried out by Guy Haywood at Derriford.

    I take 2 x 100mg of Flecainide daily and when I last saw my EP a few weeks ago and asked if I could take an extra dose if I went into AF he said no and stressed what a dangerous drug it can be if not taken correctly. Do you take a beta blocker along with yours?

    It's very unusual for a GP to be able to prescribe Flecainide, as the first doses are usually taken under supervision in hospital. I know my GP wouldn't let me have it if my EP hadn't prescribed it. If I were you I would ask to be referred to an EP.

    Regards

    Jean

  • Hi Jean , Only meds are statins and rivaroxiban . My first dose of flecainide was taken in A&E at the same time as I finally got THE elusive diagnosis . Looking forward to next N&N

    Jean S. X

  • Yes, we said we'd meet up in June, so I'll get a date sorted.

    Jean

  • That's a ludicrous argument! I was taking 300mgs of flecainide a day and used to get 30 days supply at a time! Does your GP have any patients who take it daily and what do they have to do? Get a daily supply and two on Saturday?

    Have a word with your pharmacist.

  • Hi Rellim , I asked the pharmacist ( we are a rural practise so have our own pharmacy ) if , restricting the number of doses was Practise policy . Her reply " Well it a use when necessary drug " Now why didn't I think of that !!

  • I just don't see why you should have to jump through hoops in order to get enough flecainide to do you nicely for a few days. How dangerous is it? I wasn't given any warnings about it. I had an ablation for tachycardia and they sent me home that afternoon with a single strip of 100mg tablets, probably 20 of them, saying here, take one of these twice a day. We think you have AF. Get more from your GP and then come back in 3 months. I had to read the leaflet to see that it likes to be taken on an empty stomach.

    I have just read through the leaflet. It makes no reference to taking flecainide as a pill in the pocket. It says the max daily dose is 300mgs per day for treating irregular beats of the upper heart chambers and 400 for treating irregular heart beats of the lower heart chambers. This is for adults and adolescents (13 - 17 years of age). There seem to be no stern warnings either in the leaflet or on the packet.

  • Other than being told the first PIP flecainide dose has to be given in hospital , I was given no other warnings or instructions . I am aware that at present I am only supposed to take a 200mg dose as a PIP once per 24hrs , .......chance would be a fine thing as that it my total supply lol !

  • I just take 100mgs as a PIP and it usually works.

  • I was given a strip as pill in the pocket but with no instructions as to when to take it therefore I haven't taken them

  • This is ridiculous!!!

    However if you are on PIP Flecainide - who gave you this instruction?

    You have every right to ask to be referred to a specialist EP Cardiologist if you are not under the wing of one now.

    Regarding the dose well all I can say is, you are an adult and if you could not be trusted to take the right dose of anything then they had better ban you from being able to go into a pharmacy and buy any of the numerous dangerous tablets that can be bought over the counter.

    For your further information I have been 'trusted' to take 2 x 100mg of Flecainide daily for the past 25 years and this was increased to 150mg x 2 daily recently.

    Your GP would be shocked to know that I am also 'trusted' to also take Warfarin daily.

    I suggest that at the very least you should change your doctor if at all possible.

    Finally it is important to appreciate that we are all different. Therefore I strongly recommend you seek a referral to a specialist EP Consultant.

    Ideally one such as mine,who took the trouble to ring me yesterday afternoon 2 months after my most recent ablation to check up how my heart was behaving.

    We discussed my situation and he further advised me on lifestyle and my drug regime.

    Best wishes

    Pete

  • Hi Pete , What a pity all Doctors can't be as generous as yours . Jean S. X

  • Yes I agree

    It has not always been this good it is so much to do with the individual doctor's approach.

    I hope you are able to get a satisfactory resolution.

    Pete

  • Oh yes and believe it or not I am also allowed to take it as a PIP plus Bisoprolol as PIP.

    Pete

  • This is just the latest in a long line of hassle I have had with this Gp . Am reluctant to change ( fat to fire ! ) but it has now got to the stage where I don't consult Dr unless I have no choice . Not a good position to be in so feel I have to request a change

    Jean S.

  • Your concern is that your doctor will only allow you one Flecainide PIP at a time. Those who are on it daily are a different case. That is a difficult one. If it helps, you can remind him that some people have episodes more than once in a week. Two months ago I needed it twice in a week, and at that point I should have stayed on it as prophylaxis (reduced dose, 50/50 in my case).

    1. Can you put on your best smile and courtesy and ask for three supplies?

    2. Can you promise to contact him every time you use it? Make sure you keep records if you do. Also, it is best not to make promises you end up not keeping, since that only builds mis-trust.

    3. Can you ask a series of questions such as: and if I use up the PIP and need it again the next day? And if I use up the PIP and you are not available? Are you really saying I should go to AandE if I get a second need for PIP and you are unavailable? You know that stress is a major factor, and stress makes problems worse. This fear of running out makes me stressed, so please de-stress me by giving me three days supply.

    Long shot: you could always go for a holiday in say Tunisia and buy it over the counter.

  • Some GP's are outstandingly poor but it may be there are other health issues he/she is taking into account and acting in your best interests without a full explanation, which of course you are entitled to. Good luck.

  • Hi Orchardworker , If only that were true . Sadly it's more a case of believing all ( maybe just the more aged) are morons .and incapable of taking one dose at a time !

    Jean S.

  • I take two a day all the time so limiting you seems silly.

  • I was prescribed Flecainide by the Research AF team at hospital. After taking it for a couple of months I had a telephone conversation with the AF nurse, and when I assured her I was fine, I was more or less discharged from the study. When I saw my exceptional GP, I told him how unhappy I was taking Flecainide 100mg daily when at the moment I have such a small number of episodes. He agreed, and gave me his blessing to use Flecainide as a pip. I have used it twice in the past year, the first time I had an episode when I was unwell, and it took over five hours to work, and yesterday - no reason :( - when it worked in four hours. I have a supply to use as and when needed, and he also said to go back and see him any time I felt I needed a regular dose, or to escalate my treatment.

    I am astonished at your GP's intransigence - one dose at a time? In your shoes I would be looking to change my GP. As a matter of interest, I just typed my GP's name into Google search and he came up rated five stars on iwantgreatcare.org - I wonder if your GP is on there?!

  • I checked and no he isn't . I have asked around and across the board he is disliked . Such a pity when GP s are in short supply , especially in Devon and Cornwall .

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