AF Association
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Changing medication

Been to see GP this morning for some blood results. While there asked again to change from bisoprolol to a different beta blocker. She said, you are on that because that’s the best one for your condition. So refused to change. All I want to do is try something else!

Told her I am thinking of gradually stopping them for a period to see if it’s them or my condition that’s slowing me down & causing breathlessness. I’m on low dose 1.25.

She said she doesn’t recommend it & is sure I won’t notice any difference.

Any thoughts?

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Hi Suzy.

I asked my gp a while ago if i could switch from Bisoprolol to an alternative but he categorically refused for the same reason - ‘it’s the best for you’.

Then more recently when i was able to stop taking another medication i repeated my request, explaining how i was struggling with breathlessness and fulfilling any task that required the slightest physical input. He agreed to take me off it for a few weeks to see how i reacted (a victory in my mind) and if i suffered fewer, adverse effects he would then agree and trial me on another beta blocker.

Nearly a month later i am more able to function without feeling total exhaustion and feel i would be even better if i could regain a better level of fitness that i have been prevented fom doing because of the limitations impossed by taking Bisoprolol. I return to the gp next week with an expectation of change and then improvement in my quality of life.

Ask your gp again explaining the adverse symptoms you are experiencing or maybe failing that see a different gp.

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Thanks for the reply jonjub. That sounds very encouraging. I assume you are still on your trial?

I had results of a blood test this morning as well. Now saying I’ve got high cholesterol 4.8 so need statins! And Diabetes! So more pills to come.

I would like my GP’s agreement on having a trial of coming off Bisoprolol but feel I will have to take the risk alone which is a bit daunting. Even the cardiologist a month ago said I must stay on it and in fact should increase the dose!

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Suzy 4.8 cholesterol is certainly not high to my knowledge. Mine is 6.something and my GP knows only too well not to suggest I take them and he now agrees with me that that rate is ok. I think I'd also want a chance to reduce my need for diabetes medication by changing my diet with exercise and cutting out sweet things. I wouldn't see that lady doctor next time you need a doctors advice. Just my humble personal opinion.

Jean

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Thanks for that jeanjeanie Yes I didn’t think cholesterol was particularly high but she said - with your heart condition you should be on statins.

Also I really haven’t got a sweet tooth, as I told her. But she said it’s not all down to what you eat! Then gave me a diet sheet!

We’ve agreed I can have another blood test in 3 months as I told her I don’t want anymore medication. I can see the writing on the wall 😩

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If any doctor had said this to me my reply would not be printable.

Jean has made very valid points and one would be very suspicious about your doctors’ motivation for pill pushing.

I would be asking to not only change my medications but also my doctor.

My neurologist is delighted my cholesterol 6+ as my ratios of HDL, LDL and triglycerides is excellent. I don’t take statins, refused even when I triggered the red flag on the system. Cholesterol is produced as a reaction to inflammation. If you really want to improve your health look at an anti-inflammatory health plan - one lady in our group has just dropped her morning insulin and halved her evening insulin and has had diabetes for 35 years.

All treatment for AF is only ever about quality of life so if your QOL is worse with a drug why on earth would anyone take it? - quote by my doctor.

I could feel my BP rising (I also have very low BP so not necessarily a bad thing) just reading your thread.

I do hope you get a resolution, it is your body, your docotor doesn’t have to live with the affects, you do,

I would add that my comments relating to use of Bisoprolol relate only to the use for Lone AF.

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Thanks CDreamer. I must admit it’s very intimidating trying to persuade the doctors. But you’re right about not taking them if they make you feel worse!

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I certainly wouldn't want anymore pills. I've cut down to just two now, Levothyroxine for my thyroid which was damaged by taking Amiodarone. Before I took the Levo I felt constantly tired and thought it was AF causing that. I also take Warfarin. I have a great fear of having a stroke, having seen what that can do to people. It can be like a living death!

I think that these days where doctors earn money from prescribing pills, we all have to think carefully and give great thought to what medication we'll agree to take. It has to be for our benefit and not the GP's financial one.

Jean

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So true and like somebody else said, why take something that’s making you feel worse!

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Cash cows - so true some GP just want to push certain drugd

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Agree totally with JeanJeannie, 4.7 is good unless that is the LDL figure not the total cholesterol. I think Ideally LDL should be less than 3.

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I agree. 4.8 is not high at all.

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Still not taking Bisoprolol, hope to start on an alternative next week to see how i get on with that, whatever that might be.

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Please let me know what the doctor puts you on and how you cope with it. Thanks.

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Have you asked why GP is prescribing? Is it for HR or BP regulation? I suffered horrible effects from Bisoprolol and continued to take it thinking it helped. It didn’t, it made my health a lot worse over time.

I cannot understand this preoccupation with Bisoprolol that doctors have. I remember that the AFA - in the early days - had a video of a cardiologist saying that when he developed AF his cardiologist prescribed Biso but the effects were so dreadful he stopped (he was unable to play golf). He said he had been prescribing to his patients for years but that if he had really understood the affect it has then he would never, ever have done so.

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Cardiologist prescribed Bisoprolol for HR (along with Rivaroxaban) when he eventually diagnosed AFib. GP prescribed Amlodopine years ago for BP. BP recently very much lower so GP stopped the Amlodopine. I requested to change the Bisoprolol in case it is responsible for the breathlessness and general incapacity i am experiencing and through the information found on this site, realising the problems others are and have experienced in taking it.

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I’ve had heart problems since being a child. Then 5 yrs ago I developed AF so cardiologist put me on Bisoprolol for HR.

I reduced it myself last year and felt better than I did. So I’m sure stopping it will do the same

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I was on Bisoprolol 1.25mg prescribed by a cardiologist after and emergency admission for PAF in early April. Then I had to have a 3 day heart monitor and an echogram of my heart. Results came back late June with nothing very conclusive but he said that it was probably AF starting and recommended anticoagulants to be given by my doctor. I was summoned to the gp surgery to see the pharmacist. The Bisoprolol made me feel terrible and she said straight off that I should take Zemtard instead which I have been taking for 2 weeks now, started on 180 mg xl and this has been reduced to 120 mg xl.

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I've come off Bisoprolol 1.25 and changed to a Calcium channel blocker called Diltiazem 60mg which was recommended by my Cardiologist as an alternative.

It's taken 2/3 weeks to feel the effects but now feel much better in mind and body than before.

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Suzy - I’ve had a four year saga of breathlessness with Bisoprolol and was told by my cardiologist that it was the drug of choice.

You might like to read the story here

healthunlocked.com/afassoci...

I’ve now been taking Nebivolol for three months and haven’t felt this good in four years. It’s frustrating when you feel that your problem isn’t being looked at for what it is. I decided to emphasise to my GP the impact on my quality of life, rather than concentrate on the actual side effects - might be worth a try. Best wishes.

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Thanks Finvola. I mentioned Nebivolol to cardiologist and was told- you’re far too young for that! It’s for people aged 70 and over!

I take your point about concentrating on QOL. So I will definitely say that next time.

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Suzy, that’s the second time I’ve read on this forum about being told one has to be 70 and I think it refers to something about high BP. I’ll have a search for the place where I read it.

Nebivolol doesn’t act on lung tissue, only cardiac tissue which is why people with asthma are sometimes prescribed it.

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Ok thanks. My blood pressure is always low and I’m sure the medications lower it even more. Have had episodes of lightheadedness but docs don’t seem concerned.

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I have low normal BP too and take 2 to 3 grams of salt daily, together with around 3 litres of liquid on advice from cardiologist. Seems to work as I don’t add salt to food and avoid anything processed.

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Found the page - the reference to 70 years of age is regarding heart failure at the end of para 1.

medicines.org.uk/emc/produc...

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Thanks for that. The only thing on there that should bother me is, having low BP. I’ll have to ask GP again.

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Hi Suzy I’m on 5mg bisoprosol and low blood pressure which gives me terrible headaches and still have to cope with tiredness and breathless!!!!

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Sorry to hear that Edm174. It’s horrible isn’t it 😩

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It sure is !!!! I take headache tablet and get on with it !!!!

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The ONE and only benefit I had from Bisoprolol was that it do help stabilize my very, very low BP. My GP explained it doesn’t only lower BP - I had same concern. It damaged me in other ways but it did stabilize my BP.

May I suggest you go to the STARS site - run again by the AA - section there on living with low BP which I found very helpful.

heartrhythmalliance.org/sta...

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In my area of north Staffordshire my doctor has put me on this beta blocker and said it’s because of the price that the north staffs hospitals choose this the others are better just a little bit and are also more expensive but I’m doing fine on this medication hope you fine one that suits

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Thank you. I’ve heard this before about Bisoprolol being cheaper. Glad it suits you.

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I take Diltiazen which is a calcium channel blocker that I take for irregular heart beat, I am considered to have permanent atrial fib. and i do not have to deal with breathlessness or exhaustion.......some doctors get paid and or get perks for prescribing certain med's. At least in the US.... My doctor told me he was so glad to switch to Kaiser where he did not have to deal with these high pressure med sales people coming into to try and sell him on certain drugs.......Just switch doctors......My Doctor said he was going for rate control instead of rhythm control so gave me the calcium channel blocker plus I take pradaxa a blood thinner.

I can swim and hike ok.

Good luck and follow your instincts and be firm with them

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Thanks spiritji. That’s so encouraging.

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Ask GP (who is not the best qualified person re A Fib) to refer you to Cardiologist or Electrophysiologist who will listen to your concerns and are the specialists. If Bisoprolol is impacting on your quality of life there are other Beta Blockers which can be prescribed. The GP won't change to another Beta Blocker without permission from Cardiologist so stand firm and ask to referred.

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I asked the cardiologist last month and was told I couldn’t change and in fact needed to up the dose. But I said I’d rather have a fast heartbeat than not be able to move. I will be seeing someone different next time so will mention it again.

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This happened to me too but my doctor said she was unwilling to make a change without cardiology involvement. As I am due my annual cardiology visit in October I will wait to speak to them ☹️

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Having had PAF now for 20 years I would strongly recommend you heed the advice of your doctor, some drugs suit and some do not so if you find one that helps control your symptoms to best effect you are very lucky. I found that for me the drug control only lasted 12 months or so and I needed to change drug so have been on quite a few so please be advised by your doctor.......1.25 mg is a very low dose. I would add that the Cardiologist is the one I would listen to every time rather than a G.P. who has limited specialist knowledge.

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I would ask the doctor to explain her thinking- on what grounds does she think that the current medication cannot be improved upon? The general advice is not to stop taking a BB without the doctor’s approval- this could even be dangerous.

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Thank you. I will ask.

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I definitely have noticed a difference. I was on low dose as well then they changed me to a different one and I still felt awful so I stopped them and I do feel much better but obviously my hr is no longer controlled. X

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Yes that’s what worries me. But I can’t carry on like this.

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I felt it was a risk worth taking for improved QOL. Good luck with whatever you decide x

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Thank you Scoobisu.

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I was prescribed bisoprolol 1.25mg by my GP at first and felt like I was walking and living in mud. Saw cardiologist and told him how I felt. Immediately stopped this tablet and put me on to a calcium channel blocker. I asked if I should wean off the bisoprolol and was told twice.....no it’s only a small dose! Wish I’d weaned off it! Feeling much better now. See a different GP. Xx

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Hi Suzy,

I really feel for you.

Post ablation I continued 1-25 bisoprolol, reduced from higher dose.

A long time later I have stopped it altogether.

I had these same same symptoms...tiredness low energy ...and increasing low fitness.

Over the past year I have built up my fitness ... yoga has really helped me...I am not saying that is for everyone ...but for me gentle stretch yoga helped plus a daily walk or swim. At first I had to force myself to do these things...little at a time...just regular...really small steps. It helped lift my mood and only then did I stop bisoprolol completely. At the moment I don’t get bad Af, things pretty good. I feel better, more positive and in control of my life.... it has been a big step.

My doctor always encouraged me to come off the drug....different for you I understand. Anyway I just want to support you as I really understand how difficult it can be and how gradually losing fitness just compounds a difficult situation.

I would feel very let down by my doctor if he/she would not even listen to this very real problem..

Good luck

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Hi Suzy

I had the same resistance from my GP but after persistence he let me try Nebivolol for two months, I am on my second month now and feel so much better, far less breathless and loads more energy. I was on 2.5 of Bisoprolol and am now on a similar dose of Nebivolol , I had been on 3.75 of Bisoprolol but cut it down myself as I was feeling dizzy and had a low pulse. I felt very breathless and tired was also storing water and gradually putting on weight. I have now lost that, I lost 5 lbs in the first week off Bisop, I am sure just water but it encouraged me to get off some more and with more energy that was easier.

Remember these pills all have some side affects, I still have an extremely irritating mucus producing cough, I think it because I have an almost permanently runny nose which goes down the back of my throat, I think this is caused by the pills as well, but how to stop it?? I have all the usual to no effect, anti histamine, nasal spray and salt spray , any ideas anyone.?

Good luck Suzy, do battle with you Dr and show him the list of side affects on Bisoprolol and have in mind another drug that you want to try after some research but do listen to your cardiologists advice.

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Thanks fruitcake. You’ve hit the nail on the head. Hope you continue to feel better.

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Absolutely ridiculous. My GP changed my rate control twice first to another beta blocker and then to verpamil a calcium channel blocker. She advised the cardioloist of the change AFTER we got something that worked for me. They agreed to the change much after we did it.

If your QAL if badly affected it does not matter if it's the best drug or not. ( it may well be , it also may be the cheapest!) . I would be straight back at the GP complaining of breathlessness and excess tiredness and asking him/her to solve this problem, also asking if he/she is unable to help who will he/ she send you to urgently who will solve it. Are there any other GPs in the practice you can get a second opinion from?

Are you paroxysmal , or permanent? How high was your hr when not rate controlled? Maybe this influences the GP.

I am not medically trained so can't advise on stopping your bisoprolol.

However as i was paroxysmal ,when me and my GP were "experimenting " with the rate control drugs, we also tried the PIP approach with the rate control. This did not work for me as I was on the verapamil by this time and this drug takes upwards of 4 hours to get into the system by which time my AF could be well in progress. However I understood that betablockers worked much quicker so maybe they could be used as a pip? obviously this is only of use if you are paroxysmal and you can recognise the onset of your AF, but you could also ask your GP that also. Better feeling sh*t only some of the time rather than all the time!

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I’m in permanent AF but don’t know what my HR was before I started beta blockers. One of the cardiologist team sent me for ECG while at clinic and told me I had AF and would I like a cardioversion. I said yes thinking this was a golden bullet. Then he put me on beta blocker there & then. The cardioversion put me back in NSR for 6 months then had another one which also lasted 6 months. Then the last one lasted two weeks! Can’t have ablation as I’ve got too much scar tissue due to 3 open heart ops.

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Weird, I seem to store water on bisoprolol too. With me being slim I notice it more. I have put on 10lbs since being on them. I had a strange day of weeing for England the other day and lost weight again.

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Hi. I asked why I am storing water and was told, could be lots of reasons! I used to struggle to put on weight. Not a problem now! Can’t shift it even though only gained about 6 lbs.

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I was on bisoprolol 2.5mg while in permanent aflutter this just slowed my HR down slightly to 130 .A week or two later after cardioversion and HR back to normal found I had trouble catching my breath and had to keep stopping felt worse than a AFL .Phoned taxi for A&E they could find nothing wrong but my HR was only 33 and asked me what I was taking .They told me to reduce the bisoprolol to 1.25 until I saw the EP. I monitored my HR and found it was going as low as 23 so stopped the med altogether after a few days felt ten times better and resting HR was 42 to 50.Some weeks later saw the EP and he said because I had bradycardia (low heart rate ) beta blockers reduce your HR even further and would cause my symptoms.

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Gosh that was very low. Bit scary. Just goes to show that the first dose is not always the best dose.

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Whilst my heart rate was “only” around 38 from time to time as I had Bradycardia I was told to stop Bisoprolol as it slows the heart. This is why some people feel so bad whilst taking Bisoprolol.

Pete

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Hi Suzy,

I posted on here a couple of weeks ago that i had been put on Carvedilol having asked my GP to change from Bisoprolol.

I am now trying Carvedilol for two or three weeks and feel better than when on Bisoprolol, I mentioned Nebivalol to my GP as my preferred option after what I have learned through this site and other research.

She was reluctant as she too said it was for 70 plus age group (I am less that two years from this I reminded her!) However I think I am going to ask again for Nebivalol when I see her in about ten days.

I am in permanent AF and have valve damage to my heart.

When I asked the cardiologist a few months ago what would happen in I stopped beta blockers he said I would go into heart failure......quite a scary thing to hear.

My GP said there were 3 optional beta blockers for my condition, Bisoprolol, Carvedilol and Nebivolol.

I am not sure that we have an EP here (I live on the Isle of Man) and to see an EP would probably mean a referral to Liverpool.

So I hope you manage to find something that suits you better, I sympathise with the walking through treacle feeling I had from Bisoprolol.

Good Luck

Mariah

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Thanks Mariah. I’ve just been reading up on Carvedilol.

I will mention that drug when I go back. The thought of stopping completely is a bit scary but QOL is everything.

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Hard to belive anything that comes out of a doctors mouth in the uk,told me I needed to go on statins but when I challenged them about it & told them I'd done the 3 peaks & ran up & down snowden,they backed down.

I then went to my doctor in Florida & told him about it & he immediately said NO you don't want to take them & said we'll take some blood & I'll let you know if you need to take them,never rang me back.

As for bisoprolol,I just had a cardioversion 3 weeks ago & supposed to be taking 200mg amioderone,5 mg bisoprolol & apixiban but don't take any & feel grate,doing 30 mile bike rides ect,if I take bisoprolol,I can't do anything, I do carry flecanide & beta blockers in case I feel any palpatations ect, sad when you got to self medicate.

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Just goes to show Nugger. Everybody is different and we should be treated as such. What works for one doesn’t necessarily work for the other.

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This is a really interesting thread.

I have some questions though -

Why is Nebivolol meant only for the over 70? My Italian in-laws have been on it for some time and they are only now approaching 70.

Does Carvedilol reduce the breathlessness associated with bisoprolol?

Why do doctors prescribe Bisoprolol first? Just because it's cheaper, or is it meant to have a better average outcome than Nebivolol or Carvedilol?

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Wish I knew the answer to these questions. Perhaps somebody does Pikaia.

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Suzy - remember you are entitled to a second opinion stick to your guns go see someone else. Best of luck

Tirnanog

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When I went to my cardiologist I said I was struggling walking up stairs and had terrible lethargy. First thing he said it is probably the bisoprolol. I have been on it for 2.5 years. Recovering from sepsis, (which caused my AF) so didn’t realise that it was contributing to my feeling so bad. (Was on 5mg)

So he said let’s try you onVerapamil 240 mg one tab per day for a few months. That was 5 weeks ago. I feel like I have been born again. Back to my old self. Stopped bisoprolol one day left 24 hours and started verapamil. No withdrawal symptoms . The only negative thing is terrible constipation, which is a widely known side effect of verapamil.

It seems they are all aware of how bad it can make you feel but put people on it any way. Presume there are some people who can tolerate it well ?

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You sound just like me. I’m not too bad if I do nothing but that’s no life! I look at steps with dread 😩 also any hills. I need to choose the best time to stop. Have got holiday coming up so probably after that. Also there is another GP at our surgery that I am going to make an appointment with. When I can get in that is! Thanks for your reply.

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Back again Suzy I was 14 Stone and pre-diabetic in 2015 and crippled with arthritis before I had my double by papas. I decided that I was taking enough drugs I but sugar and white flour out of my diet so eating protein, vegetables, small portion of fruit for breakfast, fish and no processed food or bread and rice but the odd potato. At that time the test showed an average boood glucose over three months as 5 ( not sure how they measure it these days) today it is 3.5 and normal I am no longer in danger of being a diabetic. I am an ex nurse and 76 type 2 diabetes can be reversed with a ketogenic or low carb diet. I also take a statin and my cholesterol is 3.1 but I do keep a tight control of what I eat

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What time of day do you take your bisoprolol? I use to take mine first thing in the morning. 7.5 and I found I couldn't move much over tortoise pace. Since then I decided to change to a bed time dose which I did gradually and at the same time reduce my dose to 5. I've much more energy and considering cutting my dose back to 2.5.

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Hi Burlingham. I’m the same, I changed from morning to evening which was better thanks.

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