As many of you know the Bumetanide that I take is really life limiting for me, meaning that every third day or second day (I have cut back from every day) I have to be very near a personal toilet for 7-8 hours. I can't even make phone calls or have visitors in the first 5 hours due to the amount of times I have to go. Touring holidays have to be carefully arranged with days in hotel rooms or similar. Recently we went to the Edinburgh Fringe for a week with friends and 2 of the days I could only emerge for dinner. My question to you all, is that I think that I read somewhere about a procedure that stops the false information that the heart (or brain?) is sending to the kidneys to tell them to store water. Am I making any sense? Does anyone know anything about this?
Thank you.
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Barb1
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I understand what you are saying. When I need to take my diuretic...furosemide...when necessary I have taken this at about 6am so the worst is over by 10am or earlier . If I'm at home in the afternoon I take it then. I've never had 7/8 hour sessions though ....poor you !
Oh dear poor you. I understand to a certain extent as I take furosemide every day and for the first 2/3 hours I'm worried about going out in case I have an accident. It works quickly and frequently. Could you not change to another diuretic or is the one you take a necessity. I know this sounds silly, but could you drink more slightly warmed (not cold) water as the water that builds in the kidneys/bladder is apparently a different water to drinking. Good luck and hope there is an answer for you to make life easier.
I also take bumetinide, and when on holiday have taken it on an evening when we are settled on a restaurant for our meal so I was near a bathroom. I do tend to work it out for my day. Though I am not 7-8 hours like you once the first hour or so is over I am reasonably ok. Is that normal, perhaps a conversation with your GP.
If you do find this miracle that you're looking for, please, please, please share it with me. I take 3 bumetanide in the morning and 3 at lunchtime, and then also combined with them, every other day a metalazole tablet! This is 7 days a week. I feel as if I should have a toilet strapped to my back. It takes over your life! I can't go out without making arrangements to take some of them earlier or later. Best of luck finding this solution, and please remember me when you do. Sharon
Sharon, I don't know how you can possibly do anything. When I am on my own, I just sit on the toilet for half an hour at a time, as I get so sick of keep going. What strength are you taking and why so much?
Hi, they're 1mg tablets, so 3 mg twice a day. I used to be on 120 mg of furosemide twice a day, or 240 mg + of IV furosemide before but it stopped being effective so was changed to the bumetanide and metalazole. I have had really bad heart failure for 3 years now, as well as af. It's a life stopper of a difference isn't it?!?! I'm not fat I'm just full of water, pills and fun!!!
I truly hope it stays that way or gets better for you. It's a long and horrible condition, and I'm sure that miracle you've been on about would be a blessing to many. Me after you though!!!
You could wait to see the cardiologist, but you’re talking a diuretic not changing the course if action, merely the medicine.
I take two Bumetanide in the morning and a Spiranalactone and don’t have your problems. However, I do have problems emptying my bladder completely which causes more visits unless I sit and wait for my bladder to refill before leaving the bathroom.
Can you lower your bumetinide? I take 1mg per day, I don't take meds very well as the usual doses are far too strong for me so they half the dosage and that usually works.
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