coming off Flecainide

[Tibbiegirl]

Since starting Edoxaban and Flecainide my hair is thinning alarmingly. I want to try changing the flecainide for something similar. Has anyone experienced coming off Flecainide and how is it done?

[BobD Volunteer]

More likely the edoxaban, Some ladies do report hair thining on anticoagulants.

[Finvola]

I agree with Bob - I've been taking Apixaban and Flecainide for nearly 10 years and have hair which breaks and falls over everything. If you research hair and anticoagulation, there are many examples of the problem.

Styling and gentle treatments can minimize the problem - heat and over-handling help to break the hair which is more fragile because of the anticoagulation.

Propafenone is an alternative to Flec but you would need to talk this over seriously with your cardiologist.

[Countrydweller2]

I've tried all the anticoagulants, they all make me ill and all destroyed my hair. What's left is so weak I can't use shampoo, it just knots and takes ages trying to avoid cutting the darn things, so now I just finger through a really good conditioner under the shower, leave it a few minutes to do its work and rinse gently. Even my hairdresser does that for me. x

[Tibbiegirl in reply to Countrydweller2]

Thank you for all replies. How can the medical professionals not acknowledge this is a side effect. It’s not listed on the medication and not really acknowledged as a problem. I’m at a loss….

[Bagrat in reply to Tibbiegirl]

Unless you have experienced hair loss it's distressing nature is played down. Others see it as a minor side effect. This may be why it is not always highlighted. I only have foils for hair colour now, as my feeling is this only affects the already "grown" hair, not the roots. I am not underestimating the distress it causes but I would put up with more thinning than I have, to protect myself from stroke.

[Peony4575 in reply to Tibbiegirl]

For something to be acknowledged as a side effect and make its way onto the data sheet enough people have to fill in a yellow card. Doctors should but rarely do in response to anecdotal complaints from patients. . Google drug yellow card or something similar and fill one in

[Tibbiegirl in reply to Peony4575]

Thank you. I have done this.

[Peony4575 in reply to Tibbiegirl]

Well done

[Elli86]

I came off flec instantly and started taking bisop. My system did not like flec one bit and I was having major issues with is. So much so that I stopped taking it as soon as I read on here about similar issues other people were having. I felt better within a day or two of returning to bisop.

[dmack4646]

Dronedarone is another possibility but generally less effective than flec

[OzJames]

I’ve been on and off it no probs but only was on it for couple of months each time then just halved the dose for a few days then down to one a day then stopped. I too stayed on Metoprolol for a while to help protect heart. How long have you been on Flecainide?

[Tibbiegirl in reply to OzJames]

Hi James. Thank you for your reply. I’ve been on it since May and Edoxaban but I’m losing so much hair and want to stop the tablets in turn to try and find which one is causing the hair loss.

[OzJames in reply to Tibbiegirl]

That’s not a long time and I’d imagine you will have no problems but please speak to Cardiologist as they may a different method of stopping and people are known to react differently and last thing you want is a jumpy heart if you cut it immediately. My guy said after 2 months just cut it immediately but being me I was more cautious and gradually weaned off over an 8 day period.

[Tibbiegirl in reply to OzJames]

Thank you James

[Tplongy]

Hi Tibbiegirl

I came off Flecainide two weeks ago as advised by my Cardiologist after being on it for 8 months as it has done absolutely nothing for my heart rhythm, so she suggested I just stopped it (I took 1 x 50ml morning and 1 x 50ml pm).

Not to be flippant - I had no side effects of stopping it, I felt crap before and still feel crap after. However I stopped under guidance from my cardiologist because it just wasn't doing anything for me. I am sure you will discuss with your Dr/Cardiologist about an alternative before stopping...

Sympathise with the hair loss, hope they can give you something else. I assume hair loss not linked to menopause and only since being on the tablets? its a minefield....

[Tibbiegirl in reply to Tplongy]

Thank you for your reply. It started about 3 to 4 months after I started on the medication. Really hard to pin down but thank you for your reply.

[Tplongy]

I know, that's the problem, things can be attributed to so many different issues....

[SuziElley]

I suffered dreadful hair loss when changed to Edoxaban but not so bad now I’m back on Apixaban. I’m also on Flecainide but think the hair loss was more due to Edoxaban

[Tibbiegirl in reply to SuziElley]

Thank you for your reply. It’s really hard as people have differing stories. I guess it’s trial and error to find out!