EDIT : Stop betablockers: EDIT: just a... - Atrial Fibrillati...

Atrial Fibrillation Support

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EDIT : Stop betablockers

Tilly1957 profile image
49 Replies

EDIT: just a quick update. I now take nebivolol, which appears to suit me very well - basically to help manage my BP but knock on effect is reduced Af episodes. With Verapamil as a pip, still on rivaroxaban. However, the big move forward is I now have a diagnosis of Fibromyalgia, which I have been chasing for a few years! The bisoprolol side effects were on top of that.

I am fed up of feeling exhausted and in pain all the time - I am convinced it’s the bisoprolol. I was amazed that the GP was on the same page as me! He had been on them but stopped and said he understood what I was saying and said it sounded like I am very sensitive to the medication! So first step, stop the bisoprolol and see him in 4 weeks. If I don’t start to feel better I am to arrange blood tests before next seeing him! He gave possible options if this doesn’t work. I am so pleased I saw him, I nearly cancelled as I thought it would be a pointless battle! I only take 1.25 bisoprolol and he said it was safe to just stop as it’s such a low dose.

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Tilly1957
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49 Replies
PlanetaryKim profile image
PlanetaryKim

I found that metoprolol (another beta blocker) made me physically weak, short of breath, sluggish, and low mood/depression. (It lowers dopamine, so that might explain the mood shift.) I only took it occasionally on an as-needed basis when in afib, not daily. But it usually created more problems than it solved. In fact, the only time it was genuinely useful for me (and I would use it again for this) is if I am experiencing tachycardia and can't get heart rate down by slow breathing. Then metoprolol will actually bring it down enough to be worth it.

Tilly1957 profile image
Tilly1957 in reply to PlanetaryKim

Thank you x

HiloHairy profile image
HiloHairy in reply to PlanetaryKim

Same, same. Makes life not worth living.

I was about to give up on all afib meds, however, Multaq appears to keep me out of AFib and isn't soul sucking like the beta blockers, plus when I do have an afib event now the waveforms (on my Cardia) look a lot more like what one expects from a sinus rhythm.

It is expensive and will be until it comes into public domain but at least through my Kaiser insurance it comes down to semi reasonable. I would be curious how expensive it is in the UK.

mhoam profile image
mhoam in reply to HiloHairy

Hi HiloHairy, Multaq, also known by its generic name Droneradone in the UK, is approved by our regulatory authority (MHRA) for use in AF and is also recommended by the National Institute of Care Excellence so can be prescribed by NHS cardiologists. It is therefore free at point of use although, of course, we have paid for it via our taxes!

One of the benefits of "socialised medicine" is that clinical decisions are not affected by commercial ones, either by the patient or doctor :-)

Good to know it works for you as I may be on quite soon

cheers

Hi. Can I ask you; what symptoms you were having on bisoprolol as I am taking 5mg per day of it? Thanks

Tilly1957 profile image
Tilly1957 in reply to

I started on 2.5mg in 2015, and reduced by half earlier this year and I felt an improvement (not a lot but at least something). I feel exhausted, thick head, aches and pains. It’s only from this forum that I realised bisoprolol could be causing me problems! I know part of my issue is gluten, but I have taken grains out of my diet 99% of the time.

kizzie105 profile image
kizzie105 in reply to Tilly1957

Hi Tilly, I m not a doctor and I don’t wish to be a scaremonger but I would consider talking to a pharmacist or another doctor before just stopping bisoprolol. Many people have no issues just stopping but if you search on here you will find others that do, myself included. My pharmacist said even low doses should be tapered off . They can advise you as to time scale. Again I have no wish to scare anyone but even low dose abrupt stopping can cause withdrawal symptoms . Please take care x

Tilly1957 profile image
Tilly1957 in reply to kizzie105

Thank you, kizzie105, for your concern. I feel I have read almost every post on this forum about stopping bisoprolol, withdrawal symptoms etc. I am only on 1.25mg, but have no fear, I will monitor things closely. The doctor I saw also has af and I feel he is well educated on the condition. I asked him about stopping or weaning off, and he said at this low dose ok to stop. X

kizzie105 profile image
kizzie105 in reply to Tilly1957

Hi Tilly, hope you didn’t mind my post, I just felt I had to say something. Good luck and hope you feel better soon x

Tilly1957 profile image
Tilly1957 in reply to kizzie105

Didn’t mind at all, hope I didn’t come across as short. I love the way everyone shares their experiences on this forum, it has helped me a lot since I was diagnosed. Your input is appreciated xxx

Auriculaire profile image
Auriculaire in reply to Tilly1957

Everybody is different. Some people can stop Bisoproplol "cold turkey" but others can't. 1.25mg is not a low dose for some people but one which causes them considerable side effects. Your doctor cannot possibly know for certain that you are not one of the people who need to wean off slowly and IMO his advice was irresponsible - though not at all unusual. Of course you will not know which category of people you come into till you take the plunge. And having gone from 2.5 mg to 1.25mg without problems is unfortunately no guarantee that stopping cold turkey will be ok. If you do experience withdrawal symptoms then you can always go back and do a slow wean. Good luck.

Tilly1957 profile image
Tilly1957 in reply to Auriculaire

Thank you x

Clyde12 profile image
Clyde12 in reply to kizzie105

I was only on lowest dose and was told to just stop it by 2 (consultant and GP). I wish I had tapered off over quite a few weeks.

Tilly1957 profile image
Tilly1957 in reply to Clyde12

I will bear it in mind, and if I feel rough in the next day or two, I may sneak in a reduced dose and taper it. Thank you for your concern. I am usually one of the first people to jump up and down saying be careful about stopping a medicine abruptly. X

kizzie105 profile image
kizzie105 in reply to Clyde12

I did taper and still suffering 3 months later, think I’m unusual though

in reply to Tilly1957

Thanks for reply. I have tiredness and brain fog at times which I believe is from taking bisoprolol. Doc advised not to reduce dosage until at least next blood test in November

Tilly1957 profile image
Tilly1957 in reply to

I find most grains give me awful brain fog, tiredness, aches and pains. So I had to get those out of my diet before I found I still have the symptoms. Thanks to all the amazing info people have posted on this site I feel I am well informed! The brain fog and forgetfulness was so bad at one stage I even thought I was getting dementia …..luckily it doesn’t look like it. X

in reply to Tilly1957

That is good to hear. I should check what I am eating aswell to see if it affects things. The bloated stomach symptom is probably the worst one. Wondering if gluten or IBS is causing that rather than bisoprolol. Still brain fog issues, I sometimes find it hard to digest what I am reading and ask people to repeat what they have just told me. Need to assess a few things. Glad you are getting on top of your symptoms.Martyn

Tilly1957 profile image
Tilly1957 in reply to

I am trying to follow something called the autoimmune protocol - message me if you want to know more, I have just realised I need to be at the dentist in 15 mins😱🤣 x

in reply to Tilly1957

Thanks. Good luck at dentist!

Tilly1957 profile image
Tilly1957 in reply to

Well pleased at the dentist - all good, no problems, back in 6 months for next routine checkup. Phew. X

in reply to Tilly1957

Excellent😀. Enjoy your day. Working 11am today😟

Tilly1957 profile image
Tilly1957 in reply to

Enjoy work x

in reply to Tilly1957

Just got back. Guna relax and watch the football. Have good evening x

KMRobbo profile image
KMRobbo

Yep I had pain and so much tiredness I was asleep 40.minutes after every 1.25mg dose .Also very low HR. I dumped them after 8 days. The cure was worse than the disease! After trying Atenolol, another beta blocker, with similar but less severe side effects I ended up on verapamil, a calcium channel blocker , which was side effect free. My GP suggested I did not tolerate beta blockers .

Tilly1957 profile image
Tilly1957 in reply to KMRobbo

I have been on them since 2015, I just didn’t connect the dots 🤣

Foxey2 profile image
Foxey2

Hi I had an ablation last Friday and my EP told me to stop taking my Bisoprolol from that day. I also was on 1.25mg and he assured me it was fine to stop straight away. I don’t know if it’s because of the ablation but I can’t say I’ve noticed any significant problems from stopping it

Tilly1957 profile image
Tilly1957 in reply to Foxey2

Thank you, that’s good to know. Ablation has never been mentioned for me, but I haven’t seen a cardiologist since 2015 when I was discharged back to the doctor. My usual triggers are certain foods, alcohol, over tired, dehydrated, too hot, over exert myself, and the ubiquitous stress. Some of these trigger in isolation, some in combination, sometimes not at all. So random. X

Windlepoons profile image
Windlepoons

I was on metaprolol, and then bisoprolol 1.25 and both of them made me feel like a zombie. Very breathless and tired. A telephone appointment with a cardiologist really helped. He took me off them immediately and said try Sotalol. I was sceptical but they worked, yippee, and no adverse effects after taking them for over a year. Good luck. It sounds like you have a good GP.

Tilly1957 profile image
Tilly1957 in reply to Windlepoons

I would prefer not to be on any. My body is not happy with chemicals, I react badly. Am glad you have found a combination which works for you. X

Windlepoons profile image
Windlepoons

So do I Tilly. That's why I'm amazed that they aren't giving me problems. ☺️

Thomas45 profile image
Thomas45

I had 2 side effects from Bisoprolol, the first urticaria, the second exacerbation of asthma. I was told by my GP to stop taking 2.5 immediately, take none for a month, then take 1.25 for a month then stop. Research showed that the side effects I had are common to all beta blockers so there's a note on my medical records not to prescribe them for me.We are all different. What some people find a wonder drug, others cannot tolerate. I hope you continue to improve.

Tilly1957 profile image
Tilly1957 in reply to Thomas45

Hmmmm…. I hadn’t linked the random itchy skin to them, as that comes and goes. I really hope I see a very positive change! Thank you x

Polski profile image
Polski in reply to Thomas45

I believe Nebivolol is meant to be a better betablocker for asthma sufferers.

Thomas45 profile image
Thomas45 in reply to Polski

I've also read that, but in my 26 years of AF I'd only been prescribed a beta blocker for 7 weeks before the 1st side effect, and so can live without them. My AF is now asymptomatic and permanent.

Fabfibber profile image
Fabfibber in reply to Thomas45

HI Thomas45. I wonder why your GP told you to stay off the Bisoprolol 2.5 dose for a month, go to 1.25 dose for a month and then to zero.

I am keen to learn more about reducing and better yet stopping medications. I was on Verapamil (calcium channel blocker), flecanide and Xarelto (ani-coagulant). I went off flecanide 9 days ago and feel the same (or better), am in sinus rhythm and Apple Watch ECG no longer shows ectopic beats. I was prescribed flecanide to keep me in sinus rhythm, however, whilst taking it I had some afib episodes and ectopics. Hoping to remain in sinus rhyhm for 3 to 4 weeks and will then reduce/stop Verapamil. I am taking one tablet Verapamil/Cordilox/Isoptin (180mg) every morning. It is a SR (sustained release) tablet and has an indentation in the middle). Maybe this means it can be broken in half to take 90mg?

I am looking for ways to get off the Verapamil. Obviously will continue with the anti-coagulant. Will use Flecainide as PIP, if needed. Or, if I can stay off the flecainide and get off the Verapamil, could use Sotalol as PIP (this worked well for me in the past). Best wishes to you all.

Thomas45 profile image
Thomas45 in reply to Fabfibber

I don't know why, but it worked. Although I've had Atrial Fibrillation for about 26 years I was only put on a beta blocker after my heart rate rose to over 190 bpm during an operation to remove my appendix, about 4 years ago. Prior to emergency admission to hospital I had had asymptomatic permanent AF for a couple of years.

7 weeks after starting on Bisoprolol I had the first side effect, painful rashes, deemed very rare, that is between 1 and 9 people in every 10,000 who take the drug. While coming off the beta blocker I had the 2nd, deemed rare (between 1 ad 9 people get it out of every 1,000 who take it. That was very sudden onset of asthma. Fortunately I was in a pharmacy at the time, close to a medical centre. I was taken to hospital by ambulance, and admitted , spending 2,5 days there.

My GPs are part of a large group of medical practice. Their research people found that all beta blockers can cause those side effects caused by one beta blocker to which I was susceptible, so I'm kept off them all. For the last 6 years I've had Asymptomatic Permanent AF. The only medication I take is an anticoagulant. I've tried one DOAC but prefer Warfarin.

Before my AF became permanent I took Flecainide for 12 years, for 10 of those the dose was 150mg x 2 a day.

Morzine profile image
Morzine

I get what you say about tiredness...I’m on sane dose as you.Mine was 2.5 and he reduced it but although I’m less tired I still feel drained some days....I start off my daily walks tired some days....

Tilly1957 profile image
Tilly1957 in reply to Morzine

I can’t walk very far at all……probably 1/4 of a mile, if that much. Can’t take my dog out, can’t walk grandchildren to/from school. Sometimes I look at the stairs, thinking I will go and shower, and I just can’t face it…….and on really bad days to go from lounge to kitchen is almost impossible. Yes, improved slightly with reduction, but not good enough. I am only 64! X

Auriculaire profile image
Auriculaire in reply to Morzine

Why don't you just try taking it as a PIP? Bisoprolol does not prevent afib attacks . I thought you had had an ablation anyway.

Morzine profile image
Morzine in reply to Auriculaire

Hi auriculaire, how was your hip op, are you in the mend?Yes exactly my thoughts about ablation and I’m still on all these tablets.....my cardio has retired and I’m now under a French woman cardio so I’m looking forward to seeing her and chatting, the cardio was nice but he had a foreign accent, (ha ha like me eh, but it wasn’t easy fir the ear and understanding ).

My doc also wants to discuss with her my tablet regime as I get puffy ankle/ bottom leg......this will all be in the new year my yearly appointment, I dint want to rock the boat pre Xmas as I’ve a rake if visitors arriving.

Hope you are on the mend now, was it a hip? I think it was....

Sue

Auriculaire profile image
Auriculaire in reply to Morzine

Hi Sue- it is 4 weeks today since op and the mend is very slow unlike last year. My surgeon said this hip was in a much worse state than the right hip with a lot of muscle deterioration. When they started hammering in the prosthesis the femur started to fracture so he had to put in a cerclage cable which is basically a sort of zip tie to hold it all together to stop the hairline fracture getting worse . I have to stick to the déambulateur or two walking sticks for another 2 weeks till the bone has knitted. With the right I could walk unsupported at 4 weeks.There has been a lot more pain this time and it is very frustrating . But I have been able to see some progress this last week and yesterday we were able to go for a night away in the Lot. Hope you get on with your new cardiologist and get your meds sorted.

Morzine profile image
Morzine in reply to Auriculaire

Oh gosh sounds very stressful and painful...I think I need a new hip but muster along at the moment..getting away for one night you just gave felt such an acheivement and that’s quite a short space of timeSue

Auriculaire profile image
Auriculaire in reply to Morzine

If you need a new hip then go for it. My problem is genetic - delicate thin bones , my sis and Mum the same. Despite my surgeon grumbling about the difficulties in the first op in fitting the prosthesis there were no complications and I recovered really well with very little pain. With hindsight I probably should have had the left done first as it always felt worse despite the right going first. Looking back I think it was actually ailing before the right but I put it down to tendonitis as it would get better for a bit . Plus the right side felt weaker and less stable though the pain wasn't as bad. Still now I am a bionic woman ! If you do get your hip done be prepared for bad knee pain on the operated side. I had it last time and it took longer than the hip to recover. Same this time . I think it's because they twist you about to dislocate the hip . It's a fairly brutal op. My surgeon looks like a rugby player!

Morzine profile image
Morzine in reply to Auriculaire

Yikes! I guess it is brutal....you’ve done very well.

Tilly1957 profile image
Tilly1957 in reply to Auriculaire

I have never discussed or been offered an ablation. My afib episodes are random and I can go several months without any. I think the longest episode has been about 12 hours. Bisoprolol replaced my bp med, benroflumethiazide (or however it’s dorky 🤣) so guess it doubled up as no and rate control x

Auriculaire profile image
Auriculaire in reply to Tilly1957

Same here. My episodes have increased since the beginning of 2020 to about 6/7 a year but they don't last longer than 12 hours. My main problem is that I changed from Bisoprolol to Nebivolol which suits me better on a daily basis but an extra dose does not bring my heart rate down as well as Bisoprolol does during an attack.

ATSF profile image
ATSF

You seem to have a sensible doctor. Mine won’t even discuss things like that. I was described as a very complicated patient about the same problems. Also on Bisoprolo 2.5mg.l but advised not to stop it. I’m told it is the likely cause of severe insomnia which is driving me round the bend. My wife also takes it with no problems.

Tilly1957 profile image
Tilly1957

Well, I had a good evening yesterday, slept well, woke up and was surprised my pain levels had decreased so much. I was surprised to find I was feeling better than I have for ages..... but about 3.30 this afternoon went into af - of course, now I am worrying because I also forgot to take my Xarelto tablet last night - oh no, no anti coagulant, no beta blocker .... 🤣 I reckon it’s purely coincidental going into af now, BUT I chickened out and took a bisoprolol tablet. 🤣🤣🤣🤣 It has calmed down a bit, but still in af. I will start again from tomorrow as I won’t have the grandchildren until Sunday and I can replace a bit x

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