Flec, Apix, Biso side effects

[stargazer61]

Hi, I am six weeks on bisoprolol (5mg), flecainide (100mg x2) and apixaban (5mg x2) daily and side effects are no better, I am exhausted, so dizzy, sleep tons and can do little physically. Does anyone take this combo, do you 'get used' to them. I posted about this a month ago, i guess I'm hoping someone might say that it takes a couple of months to adjust to them? Wishing you all a happy heart in 2016

[Finvola]

I take the same 3 drugs as you, stargazer but my dose of Bisoprolol is only 1.25mg. I was started off on 2.5mg but was soooo weak and breathless that my EP halved the dose to help me cope. Bisoprolol certainly is blamed by many of us for causing tiredness and lack of energy.

Have you talked to your physician about the symptoms generally but the dizziness in particular? Six weeks with such unpleasant symptoms is a long time and you may need some adjustment of dose or change to a different combination.

[stargazer61 in reply to Finvola]

Thanks for that, it's good to get a reply to help stop the hamster wheel going over and over the same old thing. Think I'm too used to putting up with stuff rather than bothering anyone. Am in for a blood test next week, so will raise it. Thanks again

[Kodaska]

You don't say what you're taking the flecainide for. I've posted elsewhere about what it's done to me. I took it for 5 weeks after an ablation (to prevent breakthrough arrhythmias) and it left me with a debilitating autoimmune disorder - dizzy, fatigued, and unable to do most of the activities I used to.

If at all possible, quit the flecainide. It will take about a week to get out of your system. If you still have symptoms, you're in the same boat with me. I hope you don't.

[captainKFF in reply to Kodaska]

Kid asks, may I know whats's the name of the drug-induced illness that Fleccanide led to in your case?

[Kodaska in reply to captainKFF]

The neurologist described it as a "drug-induced autoimmune disorder." That's the best he could do absent a biopsy, which would leave his patient permanently non-functional (i.e., dead).

As my regular doc said, "There's no name for what you have."

[stargazer61 in reply to Kodaska]

I actually read a few of your posts last night, what a nightmare, so sorry. I am not into tablets in general, i avoided them as much as possible even in chronic pain for fear of side effects. Feel like I'm in between a rock and a hard place. Tablets or op? Don't want either, hoping there's a natural route out, but like I say, need to talk with EP first. I do hope you are not in pain or distress. I am confounded by the loss of my 'attitude of gratitude', just hope it is a temporary thing as I adjust -it's quite something how adaptable humans can be. I wonder if I am distancing myself from the vulnerability this condition makes one feel? Best wishes to you

[Kodaska in reply to Kodaska]

Thanks. It's been a challenge. When I'm feeling self-absorbed my normal sense of gratitude is replaced by a kind of victim mentality that magnifies my sense of vulnerability. When I get my feet under me and focus on acceptance and how I can use my strengths to provide self-support, gratitude, resilience and patience return. This sounds like what you describe, and I think it's pretty normal. It's a bit of a roller coaster but I'm getting the hang of it.

You don't say how bad your AF is. If you can tolerate the arrhythmias, maybe you can wean yourself off flecainide. If not, you might want to consider an ablation. Then you (hopefully) wouldn't need the flec any more. If you stop the flec for a week you'll get a better idea if what you're feeling is its side effects. That would be good information.

Take care and please keep us posted.

For what it's worth, my condition is so rare that my cardio/EP, who has been doing ablations for years, had never seen it before. I would be happy to know there are no other such cases.

[stargazer61 in reply to Kodaska]

Good attitude. I don't know how bad my af is! I went straight from a and e to tablets and when i had a scare and went back to a and e they said side effects are probably from the flec but not to reduce or i'd be back in an episode. Will let you know what EP says when I get to him!! Thanks again

[Kodaska in reply to Kodaska]

I get such a kick out of how medical folks treat patients like babies. It's "Take this drug exactly as prescribed or something really bad will happen." Or maybe (as I was told when the doc didn't have any other argument in favor of flecainide), "We like our patients to be covered."

What might happen if you stopped flec for a while to see what happens without it?

Will you have a heart attack? No.

Will you have a stroke? No (since you're on Eliquis/apixaban).

Will you have an apoplectic fit and fall over unconscious?

This is the way I think about things and I don't recommend it for anyone else who isn't willing to take a few chances. If I were in your shoes I'd stop the flec for a while. If I had another bout of AF I'd monitor it and take notes so I'd have some baseline information to work with - to learn something about what my body's doing. That assumes I could tolerate the AF. But since I'm not in your shoes I can't recommend you do likewise.

Best of luck! I hope you get good information, good treatment, and a good future.

[stargazer61 in reply to Kodaska]

Believe me, i've considered both stopping flec, or bisoprolol, and would love some baseline info to work from like you say - one of the reasons for the wrist monitor ...but I will wait to see EP. I just felt left to my own devises with little idea of what the hell was going on - I'd never heard of anything to do with this condition or had any problems of this nature, then whap, hospital, meds, home, and you're getting an ablation.

I've tried to make use of my meantime time to learn as much as I can (more to considerr the more I learn) and look at it from different angles - including yours.

I really hope the EP is easy to connect with. When I was young I had a great dr who really listened to me, I've never had another like him unfortunately - but the EP might change all that! Fingers and toes crossed! i appreciate where you are coming from, it's another strand in the warp and weave of learning how to manage the new circumstances I find myself in. Your goodwill is plain to see and as important to me as your words. I guess what I'm trying to say is that, even if I don't take your- or anyone else's advice, I am grateful for people sharing their actual experiences in order to feel it out for myself - a definite bonus!

We heal each other by telling our stories of our time here...(Richard Wagamese, Canadian author)

Need to go put on a feelgood movie and laugh! A non-alcoholic cheers to you

[Kodaska in reply to Kodaska]

Thanks for the nice reply. When I speak plainly like that I half-expect a flaming rant in return.

I'm glad you hear me the way I intended. My perspective is just that - one person's view. I really like that you take what you learn and hear as input and carefully make your own decisions.

Always, "Take what works and leave the rest."

[Oldcarol in reply to Kodaska]

Hi. I have never tried flex and don't want to. Question is I had an ablation 7 wks ago. Did fine for 6 weeks. Now episodes are returning( not with a vengeance like before) but in and out of afib. Basically a symptomatic except for tiredness. Do most afibs live w this?should I ask for higher doses of meds to stop it?do I ignore it like most ER people do? I am on metoprolol and apixaban but am switching to warfarin as I have been paying out of pocket $450.00 month since February. I am 69 and otherwise healthy.

[Kodaska in reply to Oldcarol]

It turns out that flecainide probably had nothing to do with my disorder. What I have is mast cell activation syndrome/disorder. It has many faces and is probably quite common, though very few doctors are aware of it.

If you aren't taking flecainide, you might want to talk to your doc about it. It seems that most people have no trouble with it and it helps keep their arrhythmias under control. On the other hand, you might be a candidate for a second ablation to correct what the first one didn't. As my cardio said, sometimes the extra electrical signals will find a way around the ablation area.

Best of luck.

[Jenbo6]

I'm on 7.5 Bisoprolol, Apixaban (5mg x 2) and Flecanide 50mg x 2. I was told to double the Flecanide dose if my PAF got worse. When I did that I had very bad visual disturbances which was horrible. I now stay on 50 mg x 2 unless I get an attack and I take another Flecanide as an extra boost. It seems to work! My Bisoprolol dose is high - yes, I do feel a bit washed out but I plod along with life and do what I can and rest in between. I am unable to stop the Flecanide as suggested by Kodaska as it controls my heart rhythm so I just accept that this is how I am now. Certainly chat it through with your EP - give them a call or email them - don't wait for your next appointment. It's quality of life that counts and finding the right balance of drugs to help you cope with this debilitating problem we have. Good luck and don't give up.

[stargazer61 in reply to Jenbo6]

Thanks, perhaps I will try and get some info on when EP appointment will be. I am amazed how after something like this we are left to our own devices for so long - surely checking in on you for bp, side effects, and so on would help? I was told to come off COQ10, stop smoking, drink only rec allowance and that was all. No questions on diet, caffeine intake, nothing. Surely blood tests for mineral deficiencies, cholestorol and so on should be first to look at. I was told a tablet reduction could result in an attack, but I am basically walking from bed to the couch, any more just wipes me out. Can't be right? Anyway, I shan't give up, thanks, the replies have helped my state of mind, which is always a good thing! Warmest regards

[dmac4646]

I am on the same tablets as you , with the Bisop added recently - it was the Bisop that cause the tiredness with me am now on 1.25 and fine - do not stop any tablets unless you talk with you Dr / EP / Cardio first.

[PeterWh]

Make sure you get a full set of blood tests done including kidney, liver, thyroid, cholesterol, etc. Also get BP checked. Are you monitoring BP?

With some people BP can be fine at times and then drop for no apparent reason for a few days and then go back to normal again. This has happened to me on a few occasions but I have never got to the point of feeling dizzy. If it is the case then they may reduce bisoprolol and add an ACE inhibitor.

Did you go straight on to 5mg bisoprolol? If so that may be the problem. In my case started on 1.25 then a few weeks later upped to 2.5 for couple of months then 3.75 and then a month later 5. After ablation 5.5 months after starting Bisoprolol increased to 6.25 then month later 7.5. I was told it takes 4 to 6 weeks for body to adjust to dose changes. On last occassion EP left the choice to me astonwheth to jump straight from5 to 7.5 or step change taking 6.25. I decided step change as it worked well on the previous occasions.

[terryw]

Hi Stargazer. I am on the same drugs and dosage as you except I adjust my Flecainide dose depending on whether I am in AF or not. Drugs can affect us in different ways for different people. On the top dose of Flecainide (2 x 150mg) I eventually get progressively dizzy and once I fainted. I have a suspicion that the Bisoprolol is the one that sometimes slows me down and causes some breathlessness.My experiences are that drugs are trial and error and Consultants have a general idea only. For example I will never use Amiodarone again. TerryW

[stargazer61]

Yes i read that bisoprolol should be upped gradually, and i wondered if i was put straight onto 5mg because my bpm was going up so high (300bpm) for so long (evry gew minutes for 3 n a half hours til they found flecainide stopped it, adenosine and betablockers didn't). It was my first 'attack', I put up with it for days before going to A & E as I've had chronic pain for years, it was just another thing...wish I'd went sooner. i wonder if that's the reason then.

I am still waiting for appointment with EP, the cardiologist said I'd likely have the ablation first week in January, but I've yet to hear a peep. I'm awaiting a wrist monitor for bp and hr. Trying to learn as much as I can and not freak out, adjust to changes (not smoking, minimal beer, no chocolate, more magnesium-rich food) have asked to see nhs nutritionist. I live on a pittance or I'd be at private naturopath, Want off all meds but don't want op. Biding my time to see ep really. Many thanks for your replies, love this forum, definitely makes a difference to me, and many others from what I read, grateful thanks

[PeterWh in reply to stargazer61]

I am assuming that you ordered wrist monitor on line so you will be able to return it if you want to. You may not like my comments either. Seriously consider not using a wrist monitor as they are not accurate especially for someone who is in AF. For BP you should get a cuff monitor and at least one is approved by NICE for use by those in AF. That one also records HB but I have found that the HB recorded on an AliveCor is more accurate and reliable for comparison purposes. Initially I used a well known make of wrist monitor but when I was told by EP about inaccuracy of wrist monitors I bought cuff monitor. After buying cuff monitor I cross shocked readings and the wrist monitor could be 50% or more out and high or low. Neither % out nor high / low was consistent.

I recognise that some may not be able to afford two devices.

[stargazer61 in reply to PeterWh]

Yes, daughter's xmas pres from amazon on it's way, reviews were great, and it was miles cheaper than alivecor, also i have a really okd phone, no tablet or smartphone! Will look into this, thanks Peter

[PeterWh in reply to stargazer61]

A cuff monitor approved by NICE is the Microlife BPWatch A (A is for AFib). You can get it VAT free because it is a medical device (you have to declare so) whereas I believe for wrist monitors you can't as they can be used for leisure purposes.

[stargazer61 in reply to PeterWh]

I'll look into into this Peter, thanks for your time

[PeterWh in reply to stargazer61]

No problems. Just want to help and share the results of the researching that I did

[stargazer61 in reply to PeterWh]

Exactly, we all have to pool our resources - I've been scouring about info for hours and days - not usually a problem for me, research is the highest form of worship as pierre tielhard de chardin the french philosopher and jesuit monk said! But it isn't easy when your eyes are blurry and you feel seasick - the computer is worse than paper. Then it's gathering and considering so many things, that's why I like this forum so much, you learn so much so easily. Obviously it can only help so much, but anything that decreases worry or makes you feel heard or less scared, or that someone cares can only help. Even it the info is not for you, another's opinion can make you more aware of your own opinion on that matter, so it's all good .

Sometimes I am totally overwhelmed in the 'old brain' emotionality/survival/fear mode and other times I am detached in the 'new brain' logic mode, and trying to unite them in the heart/gut/reality as it is way that is so elusive at this point in time.

It has made me feel better to have people take the time to respond to me, and actually helped me clarify some points with my partner as I shared it with him, so all good in that respect. Now, back to the rest of it!!

[cherylbyrd]

Bisoprolol and Flecainide are both very powerful drugs which work in different ways to keep your heart rate from spiking into atrial fibrillation. And both drugs are associated with a long list of possible side effects - many of them the same. I cannot believe that it is a good decision to take both at the same time. Perhaps you should seek a second or third opinion from medical professionals who have extensive experience with these pharmaceuticals.

[stargazer61 in reply to cherylbyrd]

Easier said than done. I have now tried phoning the hospital where I was told i'd have the ablation done 'first week in january -ish' (which i don't want but have yet to speak with the ep) to see if i could get any indication of how long it might be before i am sent a letter for appointment with ep as i am struggling with side effects almost 2 months after attack and am unwilling to wait for many more weeks! I was told to go to my cardiologist. i explained he did not want to reduce my meds. She said she would speak to both him and a doctor at her hospital and she or someone would get back to me. That was yesterday morning, still waiting. Fortunately i am not in a state. Can't believe the lack of attention to feeling so ill on medications, so weird. No wonder so many people on this site go private, there's no movement worth taking before talking to ep, shame it takes so long. Thank you for taking the time - i feel the same but stuck without ep's advice and no income to consider going private. Best wishes for 2016

[cherylbyrd in reply to stargazer61]

I'm sorry to hear about thr lack of responsiveness of your health care professionals. We are located in Southwest Florida - USA and have excellent working relationships with all of our doctors. Our system is all private with various insurance plans used by patients to cover health care costs. Although these costs may be higher than those in other countries, we do receive excellent care for the most part - as people can readily switch to other doctors if they do not receive good care. Good luck to you. The ablation should help a lot and permit you to quit using most of the meds intended to control Afib.

[stargazer61 in reply to cherylbyrd]

Thank you. good to hear you are treated so well. I do appreciate our nhs. My partner's mother's nhs doctor 'dropped in' on her at 9pm just to check she was okay last week after a worry she'd had, amazing really. Hopefully i will hear something soon. Meantime i am trying to be calm and patient, as long as i can do that, i'm okay!

[PeterWh in reply to stargazer61]

Last year, a week after my ablation (I went back into AF less than 72 hours later) I received a phone call just before 8pm from the locum GP standing in for mine who was on holiday. She spent almost half an hour on the phone going through history, hospital ablation report and then my letter (with AliveCor PDFs reports and BP readings from NICE approved blood pressure monitor) that I had sent to my EP copy to my GP. Even at the end of this she still wanted me to go down to the surgery to be checked over. I assured her that I was quite happy waiting and going down the next morning rather than delaying her. In the end she reluctantly agreed and I did go down. When she saw me she was quite happy and also reassured that I was fully capable of doing self monitoring. My own GP is happy with me doing this. Needless to say I was very impressed with the locum's thoroughness and commitment.