Just wanted to know if anyone else has been on furosemide long term and then had it stopped?
To my surprise, I had a call from cardiology last week and was offered a cancellation appointment for mum. My previous post was about how annoyed I was that the appointment got cancelled 2 days before we were due to be seen!
The consultant listened to mums heart but didn’t do a scan or anything. He looked at records and said the water tablet can be stopped as there isn’t fluid build up like there was last year in May when mum was diagnosed with atrial fibrillation. We were so pleased that tablet has been stopped, he did say however, to keep the furosemide on standby and if we notice swelling in legs, or if mum begins to feel breathless again, then she can go back on them for a short time. It’s odd as I asked GP in January this year if tablet could be reduced or stopped, I was told no, mum would need to continue long term. I’m just concerned that if there is any water build up, unless it’s a lot - like swelling in legs , then it’s not going to be easy detectable.
Also, I asked consultant when we would be seen again, he replied that they will leave details open so mum won’t need to be seen unless we have any concerns, then we can contact them or our GP for a referral. I’m happy but confused too as I assumed any heart condition should be regularly monitored.
Any advice will be greatly appreciated. Thanks in advance.
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Hi, It's not unusual to have a diuretic stopped if it's not needed. A diuretic such as fureosomide doesn't actually help the heart in anyway, it just removes excess fluid however it can affect the kidneys. Far better to be taking spirolactone which protects the heart & helps to stop.fluid from accumulating in the first place. My husband has been on & off fureosomide a number of times over the years. I'm sure someone will be able to give a better explanation soon.If your mum is stable there is no need to see a cardiologist, her care can be overseen by her GP this frees up the cardiologists time to see patients who may need more help than your mum, good to know your mum isn't actually being discharged from cardiology though as most people are. Her GP should regularly monitor your mum, though this usually just means it twice a year check up plus blood tests.
Thanks for your reply, I hope the GP does monitor mum , they do normally do blood tests to check mums diabetes and other conditions.
Dear You,
Well it seems like you have had some good news with your Mums recent Cardiologists appointment and that is fantastic to hear.
He/She most be happy with the way your Mum has progressed to be released back to her Drs.
Your Mum will be able to tell when she needs the water tablets not only if her leg {s} swell but if it appears around the heart, she will feel a heaviness and a slight difficulty in breathing.
She { Mum } should have been told that the body takes a while to re-balance itself as the tablets go out of her system, so breathlessness and some swelling is common in the first few days.
I am on long term furosemide and we have tried to cut it down a couple of times with no success { 80mg } + Spironolactone 25mg .
Can I ask where you got the info about body needing rebalancing & may experience swelling & breathlessness! My understanding is fureosomide doesn't have any function other than to remove excess fluid from the body. If you experience fluid retention/ breathlessness then you're still probably retaining fluid & will need to go back on a diuretic, though hopefully for just a short period of time. We got a very nice telling off from my husband's cardiologist in January for not doing anything about ankle swelling. His ankles were swelling very slightly, hardly noticeable in fact & had been for a few days, his cardiologist said that under no circumstances should that have been ignored, he was immediately put back on fureosomide & it was agreed he could stop it again after a month or two, which he did.
Maybe my wording is wrong but when you stop the water tablets the body needs time to readjust , the was from my Cardiologist as I explained I was swelling up again after he stoped them, after a week he put me back on them.
Have you been offered Bumetanide instead of furosemide? ask about it as it seems to be better for men for some reason , my heart nurse wants me to change to it.
I've been dealing with HF for over 10 year's and have never heard of that before, does the fact you had to go back on the diuretic bear that out? My husband is seeing his HF nurse on 3rd June, EP/cardiologist on 6th June & his own cardiologist on 9th June so will ask each of them & report back what they say. Unfortunately due to recent events, VT's, post op complications, pericardial effusion amongst other things, different meds are being tried to get things under control & as he's currently under acute care his medical team are keeping him on fureosomide until further notice, but will ask if there's an alternative once things improve
Hi Lezzers, I had a device check today and the lady was saying I’m firing off a lot of VTs and they’re lasting for 25 seconds. She’s going to speak to the cardiologist about it, also I am getting atrial tachycardias, but no AFib, when in January I was told I have persistent Afib. So I’m so confused.
I assume as your device didn't shock you then either they were self terminating or your device was pacing you out of them? I don't know if 25 seconds is considered a long time. My husband is getting lots of VT's with loss of consciousness and chest, arm & jaw pain. But all his VT's were coming in under his ICD threshold of 200. So the threshold was reduced to 143 but then his VT's were occuring under that as well so his threshold has again been reduced to 128! Plus they're treating him aggressively in as much that they've changed his ICD settings so that the ICD will kick in more quickly to pace him out of any VT's. Tbh, I'm totally confused as well! Up till recently the electrics side of the heart has never been an issue but now it's become a bit of a nightmare! Will be interesting to know what your cardiologist says about it & any plan of action but it's good to know these heart devices are doing their job
Yes she did say the device is dealing with them and at 25 seconds I won’t get shocked. She’s just concerned I’m getting a lot and they’re lasting longer than they did before.
I am sorry to hear your husband is having such a bad time with them. I don’t ever want to be shocked it sounds horrendous. As he been shocked yet? I hope they can find a way to stop them. I don’t think they will do anything for me. They would probably say they’re still non sustained, and I have the full device already. They can’t change the settings as my heart failure won’t allow it. I get all kinds of activities going off when they do😀I will let you know if they call me, otherwise my next appointment is in October
Yes unfortunately he has been shocked, not great but obviously saved his life 🤞 why will they not change the settings because you have HF? What do you mean by all kinds of activities? In addition to the VT's my husband was also getting SVT's, atrial flutter & Afib so will be asking for explanations around these. My husband also has HF, I think they tried to avoid lowering his threshold again as it can interfere with his normal heart rhythm but they didn't really have any choice tbh. His VT's were causing multiple unconsciousness, severe palpitations & severe pain, they can't allow that to continue. Hes recently had an ablation, but then his VT's became even more severe & his ICD fired twice while he was actually in the hospital. So we're in a bit of no man's land as no one will discuss what's next until things have settled.
Because I have dilated cardiomyopathy which turned to heart failure because my heart isn’t pumping very well I’m getting a low biventricular pacing percentage of 88%. Because I’m getting frequent PVCs. So when they tried to up the pacing I became more breathless and I was getting lots of arrhythmias going off SVT, atrial tachycardia, atrial fibrillation, VTs. Even when I was sitting. The device then started twitching and just sitting I felt like I was sprinting and when I tried to move I felt like I was going to pass out. I left the clinic, got home and I thought it would settle. I had to go back to the clinic to get it adjusted the next day.
Thank you, that's really interesting as my husband was getting all all those activities after he'd had an ablation, as far as we know pre ablation it was just VT's. Do you have a CRT-d?
Yes I do have a CRT-D. Usually after ablation I found my heart would ache and I would get a lot of ectopics until the heart settled. I suppose it was because it was tampered with.
Thank you. Maybe it's different for an CRT-d as it synchronising the chambers of the heart whereas the ICD is just pacing you out of a arrythimia? 🤞 my husbands ablation was extensive & very invasive so his heart was very irritated as the professionals say, he also had post op complications. It was just a day or 2 after his ablation that his ICD shocked him twice, so the pain was just dreadful, he was put on diamorphine to help with this. I do keep trying to tell him that, whilst painful, the pain from a shock isn't lasting & is usually over quite quickly & that he was just unfortunate to get a shock whilst his heart was inflamed, I'm not sure he's believing me though!
Yesterday at the device clinic she said it paces me out of the VTs because they’re non sustained. If they keep going I would pass out and that’s when the defibrillator would do it’s job. I get confused by all the jargons. I have memory problems, over the pass 2 years so when they tell me things I ask them to put it in a report for me, which they do.
The memory problems are an issue for my husband as well, he has mild cognitive issues due to a previous cardiac arrest, which is why he leaves me to deal with things. But the jargon is incredibly confusing, this is new stuff to us as, despite having a heart condition for 25 years & an ICD for 10 years, this electrics business is a new thing for him & it's a lot to get your head around isn't it. Good to hear your VT's are self terminating, hopefully it'll just be a case of tweaking your meds to stop the VT's happening in the first place 🤞
Has he got pulmonary hypertension? I’m the other way round, my whole heart issues started with the electrics not working properly, or too much. Hopefully they can sort it out, because I’m on the heart failure cocktail so I don’t know what they will do next.
My husband has HF because of a previous heart attack & cardiac arrest. Because of his low ejection fraction he had an ICD fitted in 2012. Apart from back in 2020 when he had to have the pacing facility set to pace him at 50 & the same year the device indicated he was retaining fluid, his ICD has pretty much been idle. But he had cancer treatment early 2021, he was told the treatment told it would be hard on him so he was only allowed limited treatment, though his EP thinks the current problems have been caused by the virus we can't mention & his EF has twice dropped by quite a lot in a very short period of time. In October last year Papworth phoned to say his ICD home monitor he'd had 9 self terminating & sustained VTs, though they didn't say how many of each. But in January this year he had a VT storm which resulted in loss of consciousness several times, emergency cardioversion didn't work so they chemically cardioverted him & then he had the emergency ablation. Originally they did try increasing his bisoprolol to help with the VT's but not only did that not work it actually caused different problems .
Like you we don't know what's next or even if there is a next for him, no one will talk about any sort of care plan at the moment.
Hopefully a tweak of meds will be all you need, please don't be put off by my husband's experience, his health really is very complex.
He as and is still really going through it. I hope he gets some good news. Thank goodness he as you. Do try and do something for yourself as his carer. These days they can do so much for us to keep us going. The next time you see them ask them questions. I remember at the beginning they did a care plan with me but that was years ago. Write down his and your questions for them, I’m sure you know all this. I’m going to do the same.
Thank you, they are questions we asked at his last EP/cardiologist appt but they just said let's see after the ablation, as this has now been done we will ask again. They did say to us that they couldn't say the ablation would stop the VT's but they were hopeful that it would reduce them. He has his appts early June so hopefully will know more then. Thanks for replying, I do hope the VT's calm down for you also. Take careb
Furosemide was stopped for me but it was because it no longer worked and I was put on Bumetanide. In the pass I would cut it down from 2 twice a day to 1 twice a day, but I’m at the stage where I need to take it all the time now because my heart function is too low.
The consultant said mum can stop it as it looks like she isn’t getting fluid build up. He did say if mum gets swelling in her legs, or breathless, she can go back on the furosemide.
I have learned to take furosemide erratically. pubmed.ncbi.nlm.nih.gov/344... . The paper is difficult to read. It basically defends the viewpoint that you should take water tablets erratically and in this way reduce diuretic tolerance.
Not all doctors agree. My GP expects me to take furosemide daily and to take a Potassium levels test whenever the dose is changed. My consultant told me he was happy with me missing a day or two.
Basically, I have experimented with when I take it. I usually take it after a mid-morning walk, but weather and other circumstances can easily change that. After a siesta is also good. But the effect easily tapers off. So I stop for a few days and wait for the signs: a kilo or more of weight gain in a few days, breathless when first lying down, and possibly though unlikely, water on the shin bones. Also oxygen Sats are a guide. So I take 40mg for three consecutive days at different times, then leave it for a few days. Taking 20mg is not enough for me.
There are doctors who argue that it is possible, at least for patients with Heart Failure, to be weaned off diuretics. See for instance: "Diuretic withdrawal is safe for stable heart failure patients", escardio.org/The-ESC/Press-Office/Press-releases/Diuretic-withdrawal-is-safe-for-stable-heart-failure-patients
As usual, this is comment from personal experience to be used as information when you consult your doctors.
Very interesting reply, I shall be reading this, glad that you put the topic back on track for the OP
Hi, During the past year or so, I've been taken off furosemide twice. On both occasions I'd been admitted to hospital for internal bleeds, and the Doctors thought my kidney function was too low. My Cardiologist has since put me back on them due to fluid in the chest.
As was explained to me: the ancient battle between kidneys and heart. Fluid in the chest is important.
There is another angle that may help you or others. Most doctors are wedded to us taking the same medicines in the same dose each day. They back this up when they worry about levels of this that or the other in your blood. These they try to maintain within artificially tiny ranges. You have to be careful: I do not miss a day with some of my meds, meds like Warfarin, and Bisoprolol. I now have a friend who is a pharmacist and who is willing to discuss in detail my ideas and the journal articles I find. As always, check with the professionals who know you. Diuretics can be questioned.
1/ The time of day can make a difference
2/ If I am dehydrated diuretics do not work. So I make sure I take them after a drink.
3/ Check the blood pressure tablet. Diuretics I think work better when blood pressure is higher.
4/ Varying the time of day can help
5/ This is contentious: I find for me that taking them for 3 days when I need them is enough to keep on top of things.
6/ I do not worry about high Potassium levels. Reasons are for another thread. I have evaluated the dangers and take my own risks. For you it may be serious.
7/ I have Creatinine levels tracked over 30 years and many medicine packages and have a relaxed approach. For you it may be serious.
Interesting comments & very much covers my husband's situation at their moment. He's been put back on furosemide recently because of 'possible' fluid around the heart, though that's not been actually determined. He's been taking it for about just over a month but I'm concerned he's taking it unnecessarily especially as his kidney function has deteriorated but I'm getting nowhere with his medical team!ARGH!Can I ask why you don't worry about potassium levels?
Briefly, and this is not the whole story. My comments apply mostly to high levels.
There are huge problems with measurements. The slightest nervousness, or change in technique for taking the blood sample, can lead to flooding of the serum from the blood cells. False results are the norm.
I used to teach that a difference is only a difference if it makes a difference! I know more about high levels. What is the main fear? It is that high Potassium levels "may" lead to a dangerous heart rhythm. Well, not always. But do you want to be the fatal exception? I use the Wellue Holter, and i can attempt to monitor the heart rhythm myself. I think I can risk higher Potassium levels than are normally accepted.
Thank you. I was aware of the false results etc I did actually ask my husband's cardiologist if that could be the issue with my husband but was told no due to his levels being consistently high. It is a balancing act with the potassium, our GP was concerned enough about a reading of 5.9 that she phoned us about 6/7pm in the evening to tell us about it & what action my husband was to take. She said had it been any higher she would have sent him to hospital. But the hospital once told us they wouldn't be worried until the reading was 7/8. I think it is the fear that a high potassium level can cause a dangerous heart rythm & yet the only times my husband has had dangerous arrythimias is when his potassium level was in range.
I've not heard of a Wellue holter, but I get what you're saying about monitoring yourself, particularly as my understanding is a couple of high readings (unless of course they're exceptionally high) are not really an issue the real problem is if the level is continuously high, as that's what causes the dangerous arrythimias?
Right. The first sign K is high doctors check you out, and rightly so. Then once they know how well your kidney is working, and know the accompanying heart patterns, they get to assess how significant high K is likely to be. You ask, is it continuously high that leads to danger? Good question. I need to look. For now, console yourself that Furosemide tends to lower K levels.
I like to compare high K levels to tossing a coin. Heads high, Tails in range. Doctors commonly test K three times. But runs of three are very very common. 1/8 will get a run of three false High. In addition, a High may be nothing to worry about.
Thank you. Whilst the potassium isn't an issue for my husband at the moment he does already have mild kidney disease & unfortunately fureosomide exacerbates that. Potentially his kidneys can recover once he stops taking the fureosomide, however his bloods back in January showed his kidney function has already gone down this year & his bloods last week show this hasn't recovered. So, I'm struggling to understand why he's taking this drug if it's only a 'possibility' that he has fluid around the heart, based on a grainy scan done over a month ago in the re-sus room. In addition this drug lowers your BP, his medical team are concerned enough about his BP to have reduced his Entresto to every other day & stopped his spirolactone entirely. I would prefer that they either ascertain for certain that he has this fluid (he has absolutely no symptoms of fluid at all) or take him off this drug, which has no real function other than to remove excess fluid, reinstate his Entresto to every day & reinstate his spirolactone which does help his heart function better but also helps in stopping fluid being retained in the first place! Thank you for your replies, it's much appreciated.
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