Corneal deposits

[flyer]

I had a regular eye test yesterday and my optician noticed some deposits on my cornea. I take 50mg flecainide twice daily and 1.5mg bisoprolol in the evening for PAF. It has been working well for me but I have read that flecainide could be responsible for the eye problems. My question is: Has anyone else noticed this on flecainide (or even checked) and is there an alternative to flecainide that I could have prescribed?

[Hidden]

Sorry flyer, I can't comment on possible eye problems but I do wonder why you would take daily doses of these drugs for PAF?

Perhaps Bob or Grandma could elucidate, but surely that means that you will be taking these anti arythmia and rate control drugs even though yor heart is in NSR and you do not need any form of control?

[BrettonLass in reply to Hidden]

My AF is also paroxysmal. I take daily flecainide etc to prevent and minimise the effects of episodes - it is standard practice.

[jan-ran in reply to BrettonLass]

Me too. I have regular eye exams because of diabetes, so far all well. Have not heard of problems with flecainide. Jan R

[lingooz in reply to BrettonLass]

I only have pill in pocket for mine? Admit to having very few short lived attacks though

[BobD Volunteer in reply to Hidden]

It is these drugs which are controlling the AF Buzzard, Many people take this combination to be AF free rather than go the ablation route. Doesn't work for everybody.

[lingooz in reply to BobD]

I have no drugs except warfarin, and pill in pocket of metoprolol

[Hidden in reply to BobD]

I understand that they are for the control of AF Bob but don't really understand why you would take them when not in AF.

[BobD Volunteer in reply to Hidden]

To stop you GOING into AF. Some people take PIP but many take rhythm control full time.

[Hidden in reply to BobD]

OK, thanks Bob. I wondered if there was more to it than that.

As I've said in the past I'm obviously very lucky with AF. For me it's not much different from having a bad headache and I certainly wouldn't consider taking paracetamol twice a day, every day, in order to stop myself getting a headache.

[BobD Volunteer in reply to Hidden]

Lucky Buzzard. Most people would kill to be like you I'm sure.

[Hidden in reply to BobD]

Maybe so Bob, but then a lot of people would give their right arm to be ambidextrous......

[PeterWh in reply to Hidden]

I have read your replies before and always thought how extremely lucky you were. Being blunt, from your descriptions, your AF is so mild. Yours appears to be at the end of the scale where someone gets a minor scratch which doesn't start bleeding compared to someone else at the other end of the scale who has a major bleed.

I was on flecainide for following being diagnosed as being in persistent AF. Then 2.5 months later I had a cardioversion but only lasted 24 hours in sinus rthythm before lapsing back into persistent AF. My EP said no point taking it long term because the AF was too severe and flecainide was having a minimal effect, if any.

[Hidden in reply to PeterWh]

Luck is an attitude of mind Peter and it's how I deal with having AF. I use the term in some of my posts as a mantra for myself and in order not to suggest that I wish to minimise how others feel about their AF.

You know no more about my AF than I do about yours. I will continue to tell myself how lucky I am to be able to do what I can do even though, at times, I feel desperately unlucky that I probably won't get back to paragliding and that I didn't get to do some of the classic TdF climbs before being knobled by AF. Others will suggest that I've had a lucky escape....

Is it that I have very mild AF or am I just convincing (fooling) myself of that? Who knows but I will endeavour to remain positive and consider myself lucky, after all "I'm not dead yet".......

[Kodaska]

Flecainide may be standard practice, but that doesn't mean it's appropriate.

As I've mentioned before, flecainide suppresses the brain's immune system, a little-known fact. In my view, it's highly irresponsible to prescribe it in cases where arrhythmias are not seriously impairing a person's functioning.

I took that stuff for 5 weeks after my ablation last May to prevent breakthrough arrhythmias, which I would not have minded. Among a host of other side effects (which continue to this day) I had some odd visual changes, mostly in the color of black text on a white page. I also had occasional minor blurriness. Both of those effects went away in a few months. However, I've developed "floaters" which may or may not be related to your corneal deposits.

You might ask if the eye is protected by the central nervous system's immune cells (called microglia). They're the ones that go offline in the presence of flecainide.

Best of luck.

[Hidden in reply to Kodaska]

I think that you have neatly summed up my concerns about what might be "standard practice" and what might be appropriate Kodaska.

I can certainly understand the pill in the pocket approach but not their daily use when not required and not actually doing anything except, perhaps, suppressing a normal RHR.

[CDreamer]

If your episodes are occasional - you might consider the PIP approach which worked for me until they became frequent, then I started taking daily doses of 200 mg daily + 100 mg in episode when my episodes became 3-8 times a month but only up to and after ablation - about 6 months in total.

I believe Flec exacerbated a latent autoimmune condition which occurs at the neuro/muscular junction and has taken 18 months to start to control with drugs so it is not a drug you really want to be taking - unless you are very symptomatic with frequent episodes. It is a drug I wouldn't ever take again.

Sorry for repeating but it is always a risk/benefit assessment - do the benefits out way the risks? For me, 2 years ago they did, now it is a drug which is contraindicated.

[Kodaska in reply to CDreamer]

Could you explain or describe your latent autoimmune condition? I'm especially interested in what you've done to control it.

Thanks

[CDreamer in reply to Kodaska]

It is Myasthenia gravis - the immune system attacks the neurotransmitters & their receptors in the nerv/muscle junction, if not treated it can lead to death as it affects every voluntary muscle in the body, including the diaphragm and breathing muscles. Most people these days are well controlled with drugs - beginning with steroids + immune suppressants, thymetcomy, IVIG - monthly infusions or Plasmapheresis which is similar to dialysis or some chemotherapy drugs. Symptoms are controlled with Pyridstigomine every 3-4 hours.

My neurologist told me that the very complicated blood test I was given showed a very high serum count so I must have had the disease for a very long time but not showing definitive symptoms. What seems to be common factors amongst sufferers without definitive symptoms is overwhelming fatigue with no known reasons & inability to sustain exercise, which thinking back went back to my 30's.

It is thought to be a rare disease - 13000-14000 in UK - my previous GP had never seen a case in 30 years - but one that is probably under diagnosed unless definitive symptoms appear.

I take Pyridstigomine as I need it - on a good day that will be maybe 2-3 a day, on a bad day every 3-4 hours & I was prescribed Immune suppressant Mycophenolate (Cellcept) a drug which was developed for heart/kidney transplants patients to suppress rejection of the organs. The drugs took about 12 months to have any noticeable effect. I probably have a mild to moderate version, I had swallowing and breathing difficulties once or twice but have never had to be hospitalised, thankfully. I have to be very careful to avoid infections, stress & extremes of heat or cold as these will all exaceberbate symptoms.

Mg was first recognised in the 1600's and is the best understood autoimmune disease as it has been extensively studied and a cure in the form of a vaccine is on on the horizon - trials started in Europe and US in Dec '15.

Flecainide is well known to exacerbate Mg, as are Betablockers as well as most other heart drugs, almost anything with 'anti' before it including some antibiotics, most anaethetist's will not touch Mg patients unless very well controlled and even then very carefully!

I find it really hard to say, in retrospect, which symptoms such as breathlessness & fatigue were from AF or from the treatments or from untreated Mg. It was only after 2nd ablation and no AF when the symptoms didn't get better but worse and then I got definitive symptoms - muscles stopped working - that I realized there was something else going on.

I try to keep myself as well as possible - adapted exercising - I cannot sustain exercise without rest so lots of recovery periods - plenty of rest - eating 'clean' - no wheat - no dairy - diet high in plants with some seafood and almost no red meat. I avoid crowds in winter and use cold defence as a propalactic - which works very well when travelling! I have got out of the habit of meditation but use the principles of the Endorphin Effect and just do things I enjoy as much as possible!

Sorry for long reply but hope that has answered your query, I know you have a particular interest.

Best wishes CD

[Kodaska in reply to CDreamer]

Thank you, CD. I appreciate both the information and the care with which you've shared it. MG is obviously one of those disorders that one would not wish on even one's worst enemy.

I wish you well in your ongoing dance with the demon.

[CDreamer in reply to Kodaska]

Thank you, I am much, much better than I was but I lack stamina and is has been life changing and has taken some time to adjust but I am blessed with a very caring, supportive and understanding husband.

[lingooz]

Hi, I agree with Buzzard, I have had PAF for 2 years, only have pill in pocket (only used once) just on warfarin? Question as to why x

[Hidden in reply to lingooz]

Yes, much the same lingooz. I only take warfarin and have a pill in the pocket which I have yet to use and should probably be called "pill in the back of the medicine cupboard"!

[pip_pip in reply to Hidden]

Hi. What we have here is a difference in intensity of the AF episodes. If your episodes were anything like mine WERE your pip would be in your pocket. The suggestion that AF is mild and just goes away is not true. (altho maybe for some, a reality). Some of us on here need or needed pip ASAP when AF hits hard.

Be well

Phil

[Hidden in reply to pip_pip]

Indeed pip_pip, and I wouldn't dream of suggesting otherwise. The reality for me (and lingooz I suspect) is that AF is mild and does just go away.

Yes, I am very lucky (if indeed you can be lucky to have AF!) but that is no reason not to suggest to those looking for advice that there might be a different regime available.

[flyer]

Thank you all for your replies. I have been taking the same dose for 18 months now and very rarely go out of NSR so it worked well for me. I tried reducing the Flec dose myself to 1 per day but within 48 hours I started to have short bursts of irregular beats so went back to prescribed dose. I was diagnosed with PAF even though I was going back into NSR within an hour and the EP prescribed these drugs to prevent an escalation of the problem which has worked. I take apixiban as well and I am loathe to start changing things as I have had no noticeable side effects.

That's why this group is so valuable because you can get information from a large cross section of patients. Thanks again for your comments.

[Kodaska in reply to flyer]

Since you're willing to adjust your dose of flecainide, maybe try splitting pills. Its half-life is fairly long - average 20 hours - but taking it only once a day still creates a bit of a roller coaster effect. A smaller dose twice a day evens out the plasma concentration, vs. the same total amount once a day.

[Hidden]

I have taken 200mg Flecainide for 2 years and had my eyes tested a year ago; no eye issues were picked up.

Some replies have raised why take Flec daily if only PAF. I started PIP then got 9 episodes in a month so went onto daily and stayed that way, even though AF free, for 22 months deliberately to stop the heart's 'bad habit'. A cardiologist or EP was quoted here as saying the less AF you have the less you are likely to have and I plan shortly to reduce the Flec as I reckon 2 years is a good test period for this theory.

[Beta44]

I took Flecainide for 20 years with only very minor issues. A most valuable and effective drug. Mind you, I'm glad to be off it now.

Peter

[Hidden in reply to Beta44]

Did you have ablation to get off the Flecainide?

[Beta44 in reply to Hidden]

Yes, almost two years ago.

[blueair]

Hi flyer,

Just to let you know that it is possible to be the flecainide please read this

Eye disorders; very common: visual impairment, such as diplopia and vision blurred

very rare: corneal deposits

If you want to look at the website it is eMC I think it is electronicmedicines

Hope this helps a little for you

Wishing you Love Light and Angel Blessings

Angela