Diuretic alternative?

[Barb1]

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.

[Jalia]

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

[Barb1 in reply to Jalia]

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 in reply to Barb1]

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 in reply to Jalia]

Same!

[Buffafly]

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

[Barb1 in reply to Buffafly]

Thank you. I'll do that.

[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 in reply to Tapanac]

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

[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 in reply to Tikaneko]

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

[Tikaneko in reply to Barb1]

How much do you take?

[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 in reply to walker66]

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 in reply to Barb1]

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 in reply to walker66]

I'm only supposed to have mild heart failure!

[walker66 in reply to Barb1]

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]

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 in reply to LHDLondon]

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

[Buffafly in reply to Barb1]

I think a cardiologist would be the person to see?

[Barb1 in reply to Buffafly]

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

[LHDLondon in reply to Barb1]

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.

[Hidden]

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 in reply to Hidden]

Thank you Hylda. What strength do you take?

[Hidden in reply to Barb1]

1mg Bumetanide and 50mg Spiranalactone.

[Barb1 in reply to Hidden]

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

[Buffafly]

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

[Barb1 in reply to Buffafly]

The PH was a false alarm, thank goodness

[Hidden]

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

Di

[Barb1 in reply to Hidden]

Always wait.

[Hidden in reply to Barb1]

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

[Barb1 in reply to Hidden]

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

[Tikaneko in reply to Barb1]

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]

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