Diuretic alternative?: As many of you... - Atrial Fibrillati...

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Diuretic alternative?

Barb1 profile image
33 Replies

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 profile image
Barb1
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33 Replies
Jalia profile image
Jalia

Maybe if you took it every day then there wouldn't be such a build up of fluid ?

Barb1 profile image
Barb1 in reply toJalia

I did start off taking it every day and the effect was 4 to 5 hours. Less but I just couldn't cope every day. I had no life.

Jalia profile image
Jalia in reply toBarb1

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 !

cbsrbpm profile image
cbsrbpm in reply toJalia

Same!

Buffafly profile image
Buffafly

Have you asked this question on BHF? The site or forum might be more helpful.

Barb1 profile image
Barb1 in reply toBuffafly

Thank you. I'll do that.

Tapanac profile image
Tapanac

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.

Barb1 profile image
Barb1 in reply toTapanac

Thank you Tapanac. I used to take furosemide but it wasn't as effective for the oedema.

Tikaneko profile image
Tikaneko

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.

Barb1 profile image
Barb1 in reply toTikaneko

I wonder why my diuretic lasts so long and so strongly. I go every 5 to 10 mins in the first 2 hrs.

Tikaneko profile image
Tikaneko in reply toBarb1

How much do you take?

walker66 profile image
walker66

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

Barb1 profile image
Barb1 in reply towalker66

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?

walker66 profile image
walker66 in reply toBarb1

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!!!

Barb1 profile image
Barb1 in reply towalker66

I'm only supposed to have mild heart failure!

walker66 profile image
walker66 in reply toBarb1

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!!!

LHDLondon profile image
LHDLondon

Like some others replying, I’m on Furosemide (40mgs per day/taken in the morning) and don’t have any of the stresses you experience.

I would suggest talking with your GP about alternative diuretics and always take them in the morning.

I still have fluid in my legs but it’s not restricting mobility or unsightly. Ive been told i can increase the dose if need be.

Frankly i try to take a little medication as possible but still as prescribed.

Barb1 profile image
Barb1 in reply toLHDLondon

Thank you. I dont know whether to see my GP or contact my EP.

Buffafly profile image
Buffafly in reply toBarb1

I think a cardiologist would be the person to see?

Barb1 profile image
Barb1 in reply toBuffafly

Yes, he was the one who originally put me on them.

LHDLondon profile image
LHDLondon in reply toBarb1

Your GP is likely the quickest one to contact?

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.

Barb1 profile image
Barb1 in reply to

Thank you Hylda. What strength do you take?

in reply toBarb1

1mg Bumetanide and 50mg Spiranalactone.

Barb1 profile image
Barb1 in reply to

Mine is not a lot more at 2.5mg. I wonder why it affects me so much.

Buffafly profile image
Buffafly

I notice you also have pulmonary hypertension. You might have a word with HappyJo if you haven't already.

Barb1 profile image
Barb1 in reply toBuffafly

The PH was a false alarm, thank goodness

Do you hurry off the toilet or wait for double-voiding each time?

Di

Barb1 profile image
Barb1 in reply to

Always wait.

in reply toBarb1

Could you change to Spiranalactone? Bumetanide supposed to be very strong

Barb1 profile image
Barb1 in reply to

I don't think so. I was on Spiranalactone before.

Tikaneko profile image
Tikaneko in reply toBarb1

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.

Barb1 profile image
Barb1

I have halved it from 5 mg. After 2 days without taking it, I am half a stone heavier.

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