Desperate for some advice, my mum has HF and permanent AF. Mum never had asthma in the past, since she was diagnosed- just over 3 years ago, she has had to use a blue inhaler for breathlessness. Recently, her breathlessness seems to be worse. We seen a cardiologist privately in June, he suggested mum takes 80mg of furosemide if she can tolerate it. Otherwise he said to take 60mg. Mum currently takes 40mg as she has mobility issues and obviously taking water tablets will have you needing to go to the bathroom frequently. We’re trying to understand whether excess fluid is causing the extreme breathlessness. Mum’s thigh looks swollen, the right side of her leg seems more swollen than the left. I’m concerned that too many water tablets also come with side effects but do we try and stick to 80mg of furosemide for now? Especially when I can see that mum has excess fluid, or do we aim to try 40-60mg?
Also, how do you deal with extreme breathlessness?
I feel so helpless, mum feels scared when she has this extreme breathlessness.
I was told that the water tablets may affect kidney function so this is also worrying and taking such a high dose is concerning.
Any advice would be greatly appreciated.
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Nickybhf
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I would say (please note I am not medically trained and speaking only from experience) that the breathlessness is the most important symptom to treat if caused by fluid and not medication, so I would go for the max dose of diuretic and invest in (or get one from NHS) a commode - obvs your own choice could be prettier! Unfortunately there is a trade off with most meds. My father had Permanent AF, HF and COPD in the days when there were far less meds than now available and also couldn’t tolerate the ones that were. His dr warned him that an excess of blue inhaler use was ‘driving his heart’ but he couldn’t stand the breathlessness. He died of HF in the end. I know it’s hard but I think you should worry about the present symptoms and try to put the possible consequences out of your mind especially as your mother has several health issues - her present comfort should be the priority.
Also as she is still on bisoprolol I would push hard to get a change to a different beta blocker which I see has been discussed before. At the moment the bisoprolol and the blue inhaler will be cancelling each other out re heart rate, which is a ridiculous situation.
Mum is still on bisoprolol, when I’ve mentioned about changing it, the cardiologist has suggested to remain on it and it was increased to 10mg rather than the previous 3.85mg. Mum took a long time to be able to tolerate it so I’m concerned about changing her medication in case the side effects and adjusting of meds causes more problems. I think we should maybe try the increase in diuretics for now.
You mentioned that the blue inhaler and bisoprolol will be cancelling each other out, I don’t understand why the doctors would just prescribe it without taking that into consideration. Just want mum to feel comfortable and happy.
Doctors tend to ‘do things by numbers’, it’s quite common for people to be given a load of prescriptions that affect each other 🙄
Your gp can change to Nebivolol without the cardiologists say so I think. I hope others will join me in urging you to try it, it’s still a beta blocker so not a big change like going to a calcium channel blocker.
Thank you, I’ve just been reading about Nebivolol, I read that it can lower blood sugar levels without patient realising symptoms, mum is diabetic too so I’m just wandering whether that’s the reason they haven’t suggested it. I think we still need to consider options about changing medication.
Ventolin in the blue inhaler increases heart rate. Bisopropol reduces heart rate. Maybe ask about symbicort inhaler, it does not increase heart rate because it doesn't have Ventolin but it does have some sort of reliever in it that doesn't seem to affect heart rate. Also be aware that frusomide can reduce electrolytes so maybe it's an idea to get potassium and magnesium checked, both essential to heart health, in particular potassium is excreted through urine. Considering I ended up in the hospital at some stage with low potassium due to diuretics.
Thank you, that sounds like a better option but let’s see if GP agrees to change inhaler.
I also get concerned about dehydration from taking high doses of diuretics. Gosh, that’s shocking that you ended up in hospital due to low potassium, I’m surprised that our GP is not requesting to check levels more frequently, I think they say they will check kidney function every 6 months via a blood test.
They consider AFib to be a chronic disease in Ireland. I get six monthly ecg, bloods, med review, blood pressure, weight, waist measurement, height, bmi, exercise regime etc. they do check potassium and vitamin d levels, I must ask about magnesium in Dec when I'm due back.
I think the low potassium was exacerbated by liquorice. Not a good idea to eat any seemingly. N
If the Bisoprolol is contributing to the breathlessness she is not tolerating it! 10 mg is a very hefty dose. I would change cardiologists as this one does not seem to understand the effect Bisoprolol can have on the lungs. Also she should not be using Ventolin alone to deal with the breathlessness. A long lasting inhaler like Symbicort might be better.
Yes, Bisoprolol is notoriously known to cause breathlessness and it’s one of the reasons l am unable to tolerate it, as well as it lowering my blood pressure too much. It is a horrible drug for some of us and l think this needs addressing for your mum. Although l am not a medic., the bisoprolol could be causing most of her problems. Your cardiologist needs to understand how these drugs are affecting your mum and not give text book treatment. Only your mum knows how she feels.
Thank you, I just don’t understand why they seem to think that it’s best to remain on it, when ive spoke to GP and cardiologist, we get told that bisoprolol is ‘one of the good ones.’
I know cardiologists prefer bidoprolol to other beta blockers, and it probably is an excellent drug for some, but others will tell you on here the opposite and have had to stop taking them. There are alternatives and the one lots of people take is Nebivolol. AF is such an individual thing and you have to find the drugs that suit you. I think you need to insist that your mum try something else and that you are not happy with her quality of life and the problems she is having with the drugs. It is a battle for you, but don’t give up and be fobbed off.
Yes, I agree. We will need to keep pushing until they agree to try something else. I’m even considering seeing a cardiologist privately again to get medication changed sooner as when I eventually get appointment with GP, they say we’ll write to cardiology and it can take a while.
Yes, it’s such a long time with the GP. I have a struggle with mine to even get referred. Everything is a hassle and lack of care is paramount. I hope you soon get some help for your mum as she shouldn’t have to suffer like this. Bisoprolol was terrible for me. I felt l was in outer space and my heart felt like it was in a vice and restricted, as well as breathlessness and low blood pressure. Your mum shouldn’t have to suffer this way. Take care and best wishes.
I have had AF for about thirty years. It's now permanent though asymptomatic. I've been asthmatic for at least 48 years. As a result I hadn't been prescribed a beta blocker, not until my heart rate shot up, over 190, while I was having an operation to remove my appendix. I was kept in hospital for an extra 3 days while my heart rate fell to below 80. A well meaning hospital doctor prescribed Bisoprolol, 2.5mg a day, despite me telling him I was asthmatic. It soon caused rare side effects, first itchy rashes, urticaria which meant I was weaned off Bisoprolol. During the weaning I had a very sudden exacerbation of asthma and chest pains due to the asthma. It happened in about five minutes. I was in a pharmacy. Subsequently I was taken to hospital by ambulance and stayed 3 days. No more beta blockers for me.During the years I have been prescribed Furesomide for fluid retention but it had little effect. A GP sent me to see a lymphoedema nurse, and I was found to have lymphoedema of my lower legs. I wear compression socks which help mobility greatly and I'm no longer out of breath. The Furesomide was stopped. I've lost weight and can breathe much better.
Thanks Thomas, mum has never been diagnosed previously with asthma. Her breathing difficulties have only come about around the time bisoprolol was started- just over 3 years ago. Initially, she only very occasionally used the blue inhaler, but over time, she’s relying on it more and more. So I’m assuming there’s definitely a connection with bisoprolol and breathing issues.
Has your mum been prescribed the preventer inhaler for asthma that's the brown one, think they are either Clenil Modulate or Beclu. These are designed to prevent and control asthma which means you use the blue inhaler much less or hardly at all.
The blue inhaler has adrenaline in it which is not great for AF, it speeds up the heart and can make you feel quite shakey and horrible.
Your GP surgery may have an asthma nurse who might be more helpful and give your mum more time than the doctor.
You could also talk to your pharmacist about the combination of medicines, they are often easier to approach and have more time.
No one has mentioned a preventer inhaler. I think not long after mum was diagnosed with permanent AF & HF, I spoke to GP and said mum gets out of breath very easily, they said we’ll prescribe a blue inhaler for as and when mum needs it, not once has mum been reviewed about long term use and side effects. I will try and get appointment to discuss this. Thank you
I would say from my experience that yes, fluid overload, causes breathlessness. I currently take 40 mg Furosemide and a 1.25 mg of Spinoral (something like that) which is another diuretic alongside it as apparently they work differently and, so far, so good. 80mg Furosemide seems a lot to me but I am not medically qualified to advise so worth pursuing this further I would have thought. By the way, I also have to wear compressions stockings to protect the integrity of skin and veins and move the blood from ankles/legs upwards so less strain on the heart....horrible things but they work.
Thank you, mum is also taking Telmisartin for blood pressure and this particular medication also has a small amount of diuretic in it. So technically she’s on 2 diuretics. I just hope the fluid reduces enough for mum to be on a reasonable dose rather than such a high dose.
Mum also wears the compression stockings, she has done for years as she had an ulcer on her foot and was told to wear them for good.
I have AF and HF. I was initially prescribed Bisoprolol years’ ago but had problems with breathlessness. I was on 120 mg Fuorsemide at one time as well as 20 mg Spironolactone, another diuretic. The Bisoprolol was eventually changed to various different Beta Blockers and I am now on Nebivolol 5 mg with 40 mg Fuorsemide and the Spironolactone. I also take Digoxin 62.5 mcg which I believe also has diuretic properties alongside Dapagliflozin and this regime seems to work for me. I still get a bit breathless on exertion sometimes but am reasonably OK. I do not spend all day running to the loo in fact I seem to go less than some of my friends! I do have regular 3 monthly kidney function blood tests to make sure everything is still OK. I am 78.
Thank you, that was a high dose- 120mg. I thought 80mg was extreme. But the main thing is your medication change has helped and that’s positive and gives me hope that if the doctors agree to changing the beta blocker, there is hope that mum can feel better. And that’s great to know that even though your on the 40mg of furosemide, your not constantly having to use the loo. I think mum’s needs the blood tests every 3 months too but currently they are doing them every 6 months!
I think you and or your Mum possibly need to be more proactive in asking for the beta blocker to be changed. Bisoprolol does seem to be the first one they give most people but lots of people seem to struggle with this. Good luck!
I was on Bisoprolol for 3 months and it was horrendous. I could not get my breath doing the smallest of tasks and walking more than 50m felt like a marathon. 10mg is a high dose.My pharmacist explained that it attaches to receptors in the lungs as well as the heart and recommended I ask the cardiologist to put me on Diltiazem.
I did this and the difference was night and day. A side effect of Diltiazem on higher doses is fluid retention so I did have to take daily Furosemide until going down to a lower dose. This was 8 years ago
I do still take Diltiazem and only need a Furosemide when I wake up feeling wheezy. I'm waiting for valve repair surgery now, which is the cause of the current issues.
Excess fluid can cause breathlessness and sore skin if its stretched through swelling so I certainly felt better for changing meds and taking a diuretic.
However, this is just my experience and is a chat you need to have with your Mum's cardiologist.
Climbing the stairs felt like climbing the North face of the Eiger.I'm so glad I spoke to the pharmacist as goodness knows how I would have carried on like that.
When I spoke to the cardiologist about changing meds (not my regular guy) I did get the "what do you know about it?" attitude but I stood my ground with it.
Hope you can get your Mum sorted out as I can appreciate how difficult it is for her.
Has she been prescribed a a budesonide/formonterol inhalher? I have adult onset asthma, and use that morning and evening.,but it can be used inbetween if needed. My GP has just come back from a conference and she tells me that she cannot prescribe better than that, it is according to the conference 'The Gold Standard'. When I was first diagnosed with AF the Cardio removed all inhalers except for this one (Symbicort/d depending on country) as he said they were bad for the heart
Thank you. No, mums only ever been prescribed the blue inhaler. I’m now learning from this group that this particular inhaler can cause heart rate to increase. I hope I get an appointment to discuss all these options. You mentioned about adult onset asthma, can I just ask was this after a diagnosis for AF?
No it was before - but I could well have had AF then. Mine is familial and not very symptomatic, My father, myself and 4 sisters all have it, but all diagnosed when we were older, but I'm the only asthmatic, Im just careful with what chemicals are used in house cleaning, for example I have no fitted carpets, just loose rugs, tiles and laminate and a steam mop !
Thanks, we’ve seen a cardiologist privately twice this year, both of them suggested we stick to bisoprolol. Just wish they’d explain in more detail about side effects.
Investigate the product AirPhysio. Among other things, it is supposed to strengthen lungs and air capacity. My wife has started using it for mucus removal and it seems to be helping. I think it may take a little while for it to start showing results, but it is very simple to use and there is a lot about it on the Internet and at least in the United States you can get it in a few days through Amazon.
Something else I forgot to add about something like AirPhysio. It requires a positive effort, which is what we all need. Medicine, which is helpful of course, is passive. We WAIT on IT to do something. Whereas, with something like AirPhysio (and there are a host of similar products), WE are doing something, which physically and spiritually is very important.
Probably because I have faith in my Symbicort inhaler, and haven't persevered with the Air Physio as well as I should and find no diffference when I have used it and when I have not. It's no doubt my desire for instant results that's the problem😄
Two ablations, no Afib for five year. Two diuretics, furosemide and torsemide. Some days on "twenty minute plan". It can be a hassle. Some days I skip the diuretics. The key to management is checking my weight at the same time every day and then adjust the diuretic intake accordingly. Use a non-sodium salt substitute and avoid salt laced meals, (no restaurant stuff). Walking helps to pump lymph fluid to my upper body so that excess water can be eliminated. Most days I am not breathless, but when I let the fluid build up I can't even sleep, just sit on the edge of the bed all night.
I believe the docs who are providing my cardiac care are top notch, but I don't quite fit into their template of what a cardiac patient should be. I have had to work most of this stuff out on my own. Your mother may likely be in the same boat. Nevertheless, I have the highest regard for your NHS and its staff.
You mentioned that you couldn’t sleep due to the fluid? This is currently exactly what’s happening with mum. She barely sleeps, when she falls asleep for a very short period of time, she quickly gets up and says she feels hot and also breathless and ends up sitting on the edge of the bed. Then sits up and reclines bed slightly to sit and try and sleep! It awful as my understanding is lack of sleep also triggers AF.
Tojo has mentioned an important point. An HF patient should weigh themselves daily first thing in the morning. If the weight increases suddenly they know it’s excess fluid and can adjust diuretics accordingly thus hopefully avoiding problems with dehydration etc. My cardiologist has just prescribed furosemide because I occasionally get fluid build up but I wouldn’t need it daily. Once your mother has got back to what seems to be a ‘normal’ fluid balance you may be able to try lowering the dose while keeping an eye on the weight.
Thank you, yes, that seems to be a good idea. Currently I’ve noticed that even though mum is on a high dose of furosemide, I can see swelling in her thighs so she is still holding fluid.
I have had asthma since childhood and also have AFib. I have been taking furosemide for 25 years and currently take 80mg (40mg twice a day with a further 49mg if I need it) going to the bathroom is an issue. I have not had any kidney issues and if anything my kidney function is good for my age, however I do drink lots of water. I take the tablets on an empty stomach which makes the need for the bathroom very acute but contained to a shorter period of time and then I eat and I don’t have any further urgency. The only problem I have had is low potassium twice in the past four years there may have been other causes. I believe it is a safe medication but the need for the bathroom is hard to manage. Hope that helps.
Thank you, mum takes her morning dose on an empty stomach too. That definitely makes the need to go more urgent. It’s good to know that you’ve taken it long term and has no effect on the kidneys as this was one of my concerns when the GP mentioned it. Mum does not drink a lot of water- she’s on a fluid restriction, that’s why I get concerned about dehydration.
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