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Changing Medication without the doctor

katiefforde profile image
31 Replies

Good morning. While mostly I am well on my medication I do struggle with hills and stairs. I am not sure if this is my medication or my Afib. I am on 5m of Bisoperol, two blood pressure tablets (not sure why 2 different kinds) and Rivaroxiban.

A while ago I prescribed an extra 2.5 Bisoperal for when I have to do more than I would from choice. I have recently forgotten this extra dose and may be I would have prevented my last couple of Afib attacks had I remembered.

However, what I'm asking is, if I have a few quiet days ahead of me would I be crazy to just take 2.5 mg of Bisoperal and then go back to 5mg when things get hectic again. I am keen to know if I would cope with stairs etc better if I was on a lower dose of Bisoperol.

What are your thoughts - you are all so experienced and well informed.

Katie

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31 Replies

Hi Katie, getting medication right can be a bit of a challenge. There are a number of reasons why doctors opt for Bisoprolol as their first choice and for many, it works well. Others say the side effects can be as debilitating as their AF symptoms or in some cases, even worse. It sounds as if your blood pressure is quite an issue because betablockers (Bisoprolol) also help to reduce blood pressure so you are taking 3 medications which will have an impact on your BP.

We are not medically trained but it’s probably not a good idea to fiddle about with doses because of impending changes in activity levels etc. If I were you, I would seek a referral to see a cardiologist or better, an Electrophysiologist (EP is a Cardiologist specialising in arrhythmias) to have your medication reviewed. There are alternatives to Bisoprolol and they are more likely to consider alternatives than your GP. Appointments can take ages so if possible, consider a private consultation which may cost £200 or so but be cautious about tests such as an Echocardiogram as they are expensive. As a guide, some here on the forum speak highly of Nebivolol but I have no personal experience.....hope this helps.

katiefforde profile image
katiefforde in reply to

Hi Flapjack, thank you so much for your considered reply. I do have a telephone number for the cardiologist I saw first and may be it is time for a visit. I don't think my blood pressure was ever super-high so I too have wondered why so much BP medication.

I am happy to pay to see a specialist and fortunate in that I can afford it.

But that is good advice, thank you.

Katie

Hi Katie,

My understanding is that it would be unwise to 'play' around with Bisoprolol. To be honest, some health care professionals prescribe it for heart rate control and others prescribe it for BP control. It seems it has some properties which lend itself to being used for BP control. Do you know what it is prescribed for because if you don't it would be pretty unwise to switch it on and off - in my humble view.

I am on 5 mg Bisoprolol daily for heart rate control, and it does so perfectly.

However, like you, I am also on two different meds for BP anyway, Ramipril 10mg and Felodopine 2.5mg.

I don't worry about challenging my health care professionals, just get the stuff down my neck .... no side effects at all - from any of it.

John

katiefforde profile image
katiefforde in reply to

I just wonder if it is the Bisoperol that makes me lacking in energy. I also struggle with stairs and hills and I live in a very hilly area. Or is this the Afib? I think I should probably consult a doctor and the possibly a cardiologist.

Thank you for replying.

Katie

ian16527 profile image
ian16527 in reply to katiefforde

I think this is a side effect as well as shortness of breath which could account for the stairs problem.

Suzy1954 profile image
Suzy1954 in reply to katiefforde

Hi Katie. My experience with Bisoprolol for five years saw me struggle to even walk down the road! I was reduced from 5 mg to 2.5 then 1.25 and although felt better on a lower dose, still did not feel right. Eventually GP changed me to another beta blocker, Atenolol. Started to feel better after about a week! Also it seems to control my heart rate better. Good luck 👍

katiefforde profile image
katiefforde in reply to Suzy1954

This is interesting. Can you remember if the lower dose of Bisop maintained your heart rhythm ok?

We all tiptoe through the minefield, don't we?

Thank you for your in put.

Katie

Suzy1954 profile image
Suzy1954 in reply to katiefforde

My heart rate was always high at 80/90 even on the higher dose. Crept up on low dose. I tried stopping altogether but heart rate went up to 100. On Atenolol my resting rate is high 70 low 80s. Most importantly I feel better. Got my ‘get up and go’ back 👍

katiefforde profile image
katiefforde in reply to Suzy1954

My heart rate is in the low 60's - sometimes high 50's so the drugs are working. But I would love my 'get up and go' back! I'm not too bad on the flat but I live in a hilly area and hills are a problem.

Katie

Suzy1954 profile image
Suzy1954 in reply to katiefforde

I would speak to your GP as surely trying a different beta blocker wouldn’t hurt. You could always go back to Bisoprolol if need be. As Bob always says on here - its all about quality of life. That’s what I kept in mind when I went to GP and asked to just try something else.

katiefforde profile image
katiefforde in reply to Suzy1954

I'll do that. I avoid going to the doctor if I can but if we could sort this out, it would be worth the effort.

Thank you for this!

Katie

KMRobbo profile image
KMRobbo in reply to katiefforde

Not medically qualified but Bisoprolol is a rate control drug Not a Rhythm control drug such as flecainide.

katiefforde profile image
katiefforde in reply to KMRobbo

My cardiologist said fleccinidae wasn't suitable for me for some reason but I can't now remember why not. I think I need to see him.

Thank you! Katie

Auriculaire profile image
Auriculaire in reply to katiefforde

I have seen an improvement in breathing since I changed from Bisoproplol to Nebivolol. I got down to a very low dose of Bisoprolol but still did not feel right so I asked for a change. I take more of the Nebivolol but definitely have more energy.

katiefforde profile image
katiefforde in reply to Auriculaire

My breathing is ok it's just low energy and stairs/hills that bother me. I'm ok on the flat for a while though not miles and miles.

Thank you!

Katie

in reply to katiefforde

My personal view is yes it could well be the impact of Bisoprolol. When I first went on it it would take me about 30 minutes to walk/stagger a distance I can now cover in 10 minutes, and that's grabbing hold of items of street furniture for support as I went. Eventually, after many weeks it did get better and better and within months I had no problem. Now over 9 years later I am still on it and don't realise it. I am still on the original dose of 5 mg. I had other side effects, like frequent unexplained nose bleeds and I was originally told to take it in the morning. I returned to my GP and she said take it at night. I've done that ever since and no problems - her logic was that taking it at night enabled it to get to work while I was inactive. Taking it at night fixed these side effects, and the nose bleeds have never returned.

If you are taking it in the morning see your GP about taking it at night.

John

katiefforde profile image
katiefforde in reply to

I'm gathering evidence and it does seem to be the Bisoperol. It doesn't make me breathless but it does make me tired.

Thank you!

Katie

Ppiman profile image
Ppiman

I managed to have a really enlightening conversation with a cardiac nurse while I was in hospital for post-ablation afib last Friday. She had, herself, suffered arrhythmias and had also had an ablation, so she spoke from training and many years of nursing experience.

The treatment of arrhythmia, she thought, was always a balancing act between treating the tachycardia it brings in its wake (with, say, bisoprolol) and the bradycardia (and reduced BP) that such treatment brings along. Her view was that it was always of paramount importance to find a way to keep the resting heart rate below 100, which beta-blockers usually do well.

She went on to explain that a pacemaker can, eventually, be the only way to succeed as it will prevent bradycardia, allowing higher doses of rhythm control drugs to be used.

I don't think its wise to self-medicate without a doctor's approval, but from what she told me, you seem to be doing the right thing.

katiefforde profile image
katiefforde

That is interesting! It's wonderful when you have a good conversation with a health professional. They can be very patronising!

My resting heart is around 60 so the Bisoperol is certainly doing that. May be I should just put up with the lack of energy and difficulty with hills. I don't mind putting up with things but I would hate to be behaving like an old lady if it wasn't necessary.

Thank you very much for this.

Katie

Maisie1953 profile image
Maisie1953 in reply to katiefforde

Hi Katie

Like you, I have a problem with hills. I take 10mg Bisoprolol, initially I took it in one go but found that I had no energy and couldn't walk any distance before I was out of breath. I cut the Bisoprolol in half and now take 5mg in morning and 5mg with my evening meal. I know they say that you shouldn't take it at night but this is the only way I cope.

i live at the top of a hill and find it a struggle, impossible some days but if the medication keeps a fib under control then I will continue to take it.

Enjoy your better days.

katiefforde profile image
katiefforde in reply to Maisie1953

It's hard if you live in a hilly area. My doctor's surgery is on a hill, too. Like you, keeping the Afib under control is my top priority but if there was a middle ground - no Afib and a bit more energy - that would be perfect! But I dare say perfection isn't possible.

Thank you!

momist profile image
momist

Hi Katie. I'm currently taking only 1.25mg of Bisoprolol, but have been told to increase the dose to twice a day to prevent AF occurring during the night. I've not yet tried it, as the last time I tried 2.5mg about 18 months ago it made it difficult to climb the stairs. I'll watch this thread with personal interest!

Meanwhile, it is your body to do with what you will, so if you want to take a chance on a lower dose it is your right to do so. How bad is the AF when it comes? That needs to be balanced against your quality of life on the drugs. My AF used to be quite tolerable, but the most recent events have been more debilitating, as well as more frequent. I'll try the higher dose when I have less depending on me, to see how it goes.

Good luck, and I hope you get it sorted.

katiefforde profile image
katiefforde in reply to momist

Thank you for replying. I have noticed that lots of people on this site are on a much lower dose of Bisoperol. My AF is only occasional and usually after a big social event that has made me really tired. I feel that if I took more when I knew one of these events was coming up and less when I knew things were going to be quiet, it would suit me quite well. I would love to be able to go and up and downstairs freely without thinking, 'oh, that's upstairs.'

Part of me feels its trial and error for the doctors as much as it is for us!

Katie

momist profile image
momist in reply to katiefforde

OK Katie. I understand about the social events, it was the same for me until recently when my AF seems to have ramped up. For those occasions, it usually helps to 1) avoid alcohol, 2) drink lots of water, 3) relax as much as circumstances will allow. It's a good idea to make sure the people around you are aware that you have health issues, so they will make allowances. I know this is hard on your self esteem, but tell yourself that it's YOUR health and you need to look after yourself! Hope you get it sorted. I'm now waiting (again) for an ablation.

katiefforde profile image
katiefforde in reply to momist

The self esteem is damaged, isn't it? Especially if you've always been known as a woman who likes a glass of wine at parties. I no longer want to drink alcohol really and do get through a lot of water at parties but at the last one this didn't prevent an attack later. Tiredness is my biggest trigger.

You are right, we have to 'come out' about being in less than perfect health!

Katie

Maril1 profile image
Maril1

After cardioversion for aflutter and back in normal rythm in 2006 or so I was on 2.5 bisoporol . I was about 46 at the time a big strapping six footer, I was walking along and I had to keep stopping .A little old lady asked did I need help I said I was alright trying not to embarrass myself and then phoned taxi for A & E .They said everything was fine except my HR was only 33 so reduce the bisoporol to 1.25 . When I got home my heart HR that evening went as low as 23 at rest(using HR monitor) after a few days stopped taking the bisoporol altogether and HR went up to 42to48 at rest after about a week and could get back to normal routine including playing football and hill walking

katiefforde profile image
katiefforde in reply to Maril1

I was similarly embarrassed the other day when I had to stop in the road to read a notice to give myself a chance to catch my breath. Someone came out of a shop to see if I needed anything.

I think it's time I went back to the Dr's. I'll discuss it with him and then do what I think is best.

Thank you!

Katie

Maril1 profile image
Maril1 in reply to katiefforde

If you're going back to the doctor's ask for an appointment or referral to a consultant if you don't already have one .They seem to have more meds in their amoury and should be more aware of the different idiosyncrasies ( for want of a better word!) as GPs only tend to go for betablockers as a suits all remedy.You may have to be may quite insistent even forceful but I am sure you will find something that suits you .There are plenty of people on this site who can give you a more in-depth view and are a tremendous help whenever you're unsure.

I hope this helps.

katiefforde profile image
katiefforde in reply to Maril1

This is very sound advice. I will do this when I'm not so busy. Although the prescription for Afib - bisoperol and blood thinner was prescribed in hospital my cardiologist approved it later. It does mostly work but I do struggle with hills and taking exercise is a problem. This doesn't help the quest to lose weight!

Thank you for your help.

Katie

Stobban profile image
Stobban

Hi,

I'd leave it to the doctor to decide if you explain to him your thoughts, you never know he may listen and agree with you........I am on 15mgs daily Bisoprolol and my Blood Pressure is steady with a 55 beats per minute heart rate. The only thing I doubly know for sure that no matter what your weight is, but if you drop a few pounds, even although you are normal weight the heart copes tremendously better.. I know I proved it to myself and only myself which is enough.

katiefforde profile image
katiefforde

I am trying to lose weight but with little success. However I will persevere. My son kindly said he'd make some meals for the 800 Fast diet. That will give me a good start.

Thank you for your advice.

Katie

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