Help regarding meds: I am still taking 100 mg... - AF Association

AF Association

20,542 members25,148 posts

Help regarding meds

stoneyrosed
stoneyrosed

I am still taking 100 mg of Flecanide a day and 1.25 mg of Bisoprolol despite since starting the flecanide i have been feeling worse (Tiredness, fatigue) bp down in the 40s and up in the 80s and 90s everyday, palps and af almost everyday and feeling very down. I told the cardiologist who prescribed them and he basically said the meds are not working and your down on the list for a cryoablation but could be months or more. He said it was up to me if i wanted to continue with the meds, i got the impression he wasnt bothered either way. I am now worried about stopping the meds and worried if i continue the meds. Any advice is as always most welcome.

46 Replies
oldestnewest

You say you got the impression your cardiologist wasn’t bothered either way. That is not a nice position to be in.

I think you must contact your cardiologist again and explain how bad your QOL is.

Remind him that you have to endure until the ablation and ask him for best advice on minimising your nasty symptoms.

Pete

I don’t particularly want to get on the wrong side of the cardio has i am hoping i am in his thoughts regarding any cancellations that may arise. I know this isnt an ideal way to go about this but it is my gut instinct.

I can't see why you should be frightened to talk to the cardiologist unless you think he is particularly antagonistic towards you. You are the person enduring this horrible situation.

He should know that your QOL is being seriously affected by the status quo and that it is making you unhappy as well as unwell. If you say nothing he thinks all is well, that is if he thinks about you at all.

If he is anything like a good doctor he should understand and hopefully help you to cope one way or another.

Pete

I have phoned him several occasions and i get the impression that he thinks we have gone down the meds route and i am on the list for an ablation, so it is for me to sit tight and wait for a call. I will go and have a chat with the pharmacist though and see what they have to say about the meds. Thanks for your messages I appreciate it 👍

I'm with Pete on this one.

I find it confusing why cardios can't give us the decision about if we should continue med's or stop them. I had the same decision given to me a few months ago - I decided to continue after some thought.

Surley a cardio can offer one suggestion or an another ?

May I suggest contacting your pharmacist for advice also. IMO they tend to be on the ball / are helpful and often know more than doctors about med's (sorry to any doc's reading this post). They can't change your med's but might offer some useful advice,

Worth your first port of call maybe ?

Paul

Buffafly
Buffafly in reply to Paulbounce

My GP told me to take any queries about meds to a pharmacist as they are the experts 🤓

Yes thats a good idea i will contact the pharmacist tomorrow and see what he/she says regarding the meds. Just one thing, i sent my ecg to the cardio and he said from the ecg he can see what is going on regarding the AFIB and they have already decided on doing the cryoablation, i am not sure a pharmacist will know what is best for me has he doesnt have access to my ecgs. But a chat cant do any harm i suppose, thanks 😊

How was your heart before you started taking the tablets?Also have you had an ECG since starting the Flecainide to make sure it's not causing atrial flutter?

Jean

Hi Jean, i had a particularly bad few spells of afib before I started taking the flecanide and i suppose they were getting a little more regular, but since starting flec i feel much more tired and generally unwell and i suppose much more depressed regarding my outlook on everything. But and here is the gist, i dont think the afib attacks are quite as harsh as before so it is a bit of a dilemma really. I wish my cardio would have been a bit more positive regarding my next stage of treatment, but i suppose they know what they are doing. I know i am not assertive enough but they kind of have a way of talking to you in a way of i am the expert and your not so to speak. I have sent him a ecg recently and he mentioned nothing regarding a flutter. I did push him about wearing another 24 hour heart monitor which he agreed and i am due to pick that up on Oct 12. Thanks Jean i always respect your views. 😊

So is your medication 2 x 50mg of Flec daily and one dose of 1.25 of Bisoprolol? If so they are very low doses of both medications and really shouldn't be making you feel the way you are. You say your bp is down in the 40s and up in the 80s and 90s everyday. Are you talking about your diastolic blood pressure, or is that a typing error and it's your heart rate?

Are you taking your Bisoprolol at night? If not I think I would try that.

Jean

Hi, Jean, my heart rate was going up in to the 90s and sometimes down in the low 40s, I take 50 mg of flecanide and 1.25 Bisoprolol in the morning and a 50 mg of flecanide on a nighttime. .

Try taking your Bisoprolol at night, that might reduce your feeling tired.

Will give it a go and let you know how i go, thanks Jean 😊

My initial thoughts on reading your post was it is probably the Biso not the Flec causing the tiredness and I am surprised your cardio gave up on the Flec so early at such a low dose; of course Flec doesn't work for everybody though.

I may have missed your earlier posts but you don't say in this one how long you have been on the Flec & Biso. A personal history may help: I started on 100mgs Flec (a low dose) & no Biso and felt weird in the first month and still had many AF episodes. Two cardios & an EP then offered me an ablation but that didn't sound good either so I suggested to my new cardio that I try 200mgs Flec (a medium dose) first. I still felt weird but the AF episodes did stop and 2 months later I started to feel better, which coincided with starting taking Magnesium & CoQ10 supplements, which may or may not have been the reason. 6 years later still on all the same with good QOL.

I can recall in 'the early days' I could hardly walk up a gentle incline without feeling something was going to go wrong!! In comparison now with the help of many subsequent lifestyle changes I am like one of those Duracell bunnies - most days.

I have only been on the flec for about5 weeks, i have been on Bisoprolol for about two years, have always had bouts of AF but they were getting more frequent so the cardio recommended 100mg of Flec, I felt awful on them and sent him an ECG which afterwards he called me and said i am on the list for a croablation and it was up to me if i wanted to continue the meds, so now i am in a dilemma on wether to continue discontinue or up the dose. ☹️

Have you tried taking the bisoprolol at night?

I would not consider a 24hr monitor. It needs to be on for a week unless your AF is permanent. Mine picked up AF in the middle of the 4th night whilst I was asleep.

stoneyrosed
stoneyrosed in reply to jennydog

I am hoping the cardiologist will still get some idea from looking at a 24 hr monitor, his recommendation so i better go with it.

I take 100 mgs twice a day plus 1.5 Nebivolol and can now walk 5 miles a day at 77! EP says if necessary we can always go up to 150. Previously I was 2 days in AF one day out for months and couldn’t walk 100 yds and talk at the same time.

stoneyrosed
stoneyrosed in reply to Hylda

Yes i am suprised my cardio hasnt tried changing my dose. I know i am very lucky to be offered an ablation and appreciate that from the hospital but i am still suffering symptoms and really struggling.

Hylda
Hylda in reply to stoneyrosed

Will pm you.

stoneyrosed
stoneyrosed in reply to Hylda

Thank you

Reena09
Reena09 in reply to Hylda

Hi Hylda - do you take any supplements? My EP has suggested I shouldn’t take magnesium but so many on this forum suggest it helps them.

Hylda
Hylda in reply to Reena09

I take magnesium morning and evening,

Reena09
Reena09 in reply to Hylda

what type of magnesium?

Hylda
Hylda in reply to Reena09

Sorry, it’s from Healthspan, nothing posh!

Reena09
Reena09 in reply to Hylda

Sorry, I meant citrate etc? And what dosage do you take?

Hylda
Hylda in reply to Reena09

I know but the Healthspan doesn’t say what it is on it. 187.5 mg twice a day. Probably a placebo!

Some good suggestions above.

My personal view is that any treatment may help but it also has the capacity to not help or make things worse. If the latter is the case, then stopping is better than continuing as Flecainide, as with any substance, has the potential to harm and in my case cause other changes to the heart rhythm in some people. Minor changes were found on my ECG after some time on Flec.

Unfortunately until you try, no one can predict how you personally will react - hence doctors are unable to offer more certainty. Now that may not be what we want to hear but is the reality.

It sounds to me as though your cardiologist is being open and honest with you and that this is the reality of your situation. The question is what would you like to happen now?

In your situation I would want more information and to be able to talk through my remaining treatment options so would push for another consultation and go armed with probing questions and/or seek a second opinion - which can always be useful.

If the Flec is not stopping the AF episodes, which after 2 years of it being helpful for me, is what happened to me, you stop the Flecainide you may very well find that you do start to feel better when you are in NSR but the AF episodes may become more frequent and symptoms worsen - which again was my experience. The next treatment steps for me were Amiodarone - no thank you or ablation, which I chose.

These are rare or very rare side effects which Flec is known to cause:-

Rare or very rare

Anxiety; confusion; corneal deposits; depression; drowsiness; flushing; hallucination; headache; hepatic disorders; hyperhidrosis; inflammation; insomnia; memory loss; movement disorders; peripheral neuropathy; photosensitivity reaction; respiratory disorders; seizure; sensation abnormal; syncope; tinnitus; tremor; vertigo

bnf.nice.org.uk/drug/flecai...

It does sound as though this may be causing your depression and drowsiness.

You did say your BP is in the 40’s and up in the 80’s/90’s? Did you mean BP or your HR=heart rate as BP is normally 2 number ie 120/70.

Best wishes CD.

stoneyrosed
stoneyrosed in reply to CDreamer

Yes my heart rate was in the low 40s and in af was up into the 90s and occasionally over that, and thats after taking flecanide. I have only been using it for a few weeks and perhaps it needs some time for it to have an effect on my system. Will have to seek out some advice thanks so much 😊

Have you talked to your GP? Of course they are not the experts but often do have a good knowledge and might have some suggestions. (Or maybe I am lucky with my GP!)

You are 😀

I have had some awful consultations with my GPs over the years, one was convinced i was an hypochondriac and would email me leaflets on the subject, others were led to believe i had anxiety. Wasnt until about ten yrs after i was suffering from palps which must have been AF did they eventually send me for tests at the hospital which confirmed AF. So i dont have much faith in the GPs unfortunately. I am also disappointed in the fact that most consultations are done over the phone. If nurses & Doctors can see you in hospitals why cant Gps see patients in surgery, however i digress 😊. Thanks for your help 👍

jennydog
jennydog in reply to stoneyrosed

Would you believe that a friend of mine, who maybe starting with dementia has been offered a consultation to be conducted over the phone ?

stoneyrosed
stoneyrosed in reply to jennydog

So many very strange things happening in the NHS right now that doesnt suprise me! The people who are making these decisions cannot be caring people. Can they? I certainly think that the medical profession should start to speak up about these things, it just isn't ethical.

cuore
cuore in reply to Pointysticks

I second Buffafly's response.

I was on the same dose as you 100 (50 2x a day) with 1.25 Bis and got a breakthrough so I asked my cardiologist for a higher dose. He said 200 and I asked for 150. Max is 300 and I wanted room to increase the dosage. I was told every AF event lays down path ways to make AF easier to occur. I think in general there is a relationship to frequency and severity of AF events and poor out come with ablations. I only had one breakthrough so lucky for me I didn't have go up much. That was several years ago and still no AF. I had a mild persistent headache for a year from the Flea and the combo still makes me feel like I just gave 4 pints of blood. Like others I suggest talking with a pharmacist get a dosage or perhaps other drug and then talk to your doc. Good luck. I also take magnesium.

stoneyrosed
stoneyrosed in reply to jwsonoma

Thanks so much for that much appreciated 👍

Reena09
Reena09 in reply to jwsonoma

What type of magnesium do you take?

jwsonoma
jwsonoma in reply to Reena09

Mn citrate. For me cutting alcohol back to maybe one a week at most from 3 a day and getting my BMI down to 22 has done the most according to my cardiologist. He said I may never have another AFib.

get a referral to a doctor that does care

stoneyrosed
stoneyrosed in reply to Soosiep

Easier said than done unfortunately

I was on 50mg x 2 Flecainide and one night it felt like a fish was trying to escape from my heart. It then went into complex tachycardia.

I had a Cardioversion and my Flecainide was upped to 100mg x 2. Since then my heart has been sort of behaving with no tachyarrythmias apart from ectopics.

stoneyrosed
stoneyrosed in reply to Palpman

Yes that was a conversation i think i will have to have with the Cardio upping the flecanide dose to 100 x a day, even though i don’t feel great since starting the flec it could just well be the dose isnt high enough. Bit daunting taking a higher dose though if it simply the fact that the flec doesnt agree with me, hey ho i suppose there is only one way of finding out. Thank you 👍

Palpman
Palpman in reply to stoneyrosed

I felt rather ill on the 200mg Flecainide per day but I was determined to stick it out and I'm glad I did. There was no alternative for me.

stoneyrosed
stoneyrosed in reply to Palpman

So your body got used to the 200 mg and you feel much better? How long did it take before you started to feel better?

Palpman
Palpman in reply to stoneyrosed

It took about 3 weeks to subside but I also had my gall bladder removed due to infection and gallstones soon after. Some of the symptoms could have over lapped.

You may also like...