Is anyone with cirrhosis (due to PBC) on diuretics (Spironolactone & Furosemide) for treatment of ascites?

If so, does it wake you up multiple times during the night to go to the toilette. How are you handling the sleep deprivation?

Your experience, advice, opinions are very much appreciated.

Many thanks!

[Jackie71]

Yes on both of those, have been since diagnosed 2010. Dosage does go up and down and yes do wake in the night. I am on high dosage of both and should limit my fluid intake but that doesn't always happen. Am paranoid about weight/fluid gain as had couple of drains initially and wasn't pleasant but then nothing is with pbc. Do have issues with tiredness but have decided in 2014 that I am going to do my best to avoid any negative thoughts and get my life back! I do work full time and don't see that changing unless the premium bond comes up,

[operatic in reply to Jackie71]

Yes I have PBC and on Furosemide. I only sometimes have to get up once in night but its in day I may need to suddenly dash. My tummy is very big.

[Hidden in reply to operatic]

Thanks, you're lucky for minimal night disturbance and the sudden dash is very familiar.

[Hidden in reply to Jackie71]

Thank-you, Jackie, your situation is very similar to mine and we do certainly have to make the best of it, mostly, accepting our new normal way of life.

[Ohio82]

I take it from time to time for water retention because of a heart issue. I also have PBC. I also have an urgency issue so when I have to go I have to go. At times it's like every 20 minutes. It's really hard but u do what u have to do

[Hidden in reply to Ohio82]

Thanks, Yes, the urgency issue is quite a challenging one!

[CinSF]

Nadaline, I take both drugs for other reasons and they don't keep me up during the night unless I take them within about six hours of bedtime. Furocemide (also sold here under the name Lasix) is only effective for around six hours, hence the name. So I take my diuretics when I first get up in the morning and then again midday. If I am retaining a lot of fluid, I might take one before bed knowing it will get me up, but it is so important to keep the water off, I am willing to be up a few times.

Think about adjusting the times you take your pills. I hope that helps a bit.

[Hidden in reply to CinSF]

Thanks, CinSF, I also take them in the morning and 12noon, you would think they are the best times to avoid sleep disturbances but, somehow, it doesn't make a difference.

[Hadley]

I had significant ascites and went on both medications daily. Had bad leg cramping so have been on it every other day.

Best taken in am, but when working take it at 5 or 6 pm and by bedtime usually do not need to get up.

Seems more effective if taken in am, but then I can not have plans for the next 4 hours, so it is tricky. I try and take it early, ie 5 am.....for me in about an hour it takes effect then every 30-40 minutes over the next 4 or 5 hours.

Ascites gone, so that is worth it all....Doc now says do not need to take it as often if ascites under control. Liver studies much better, thanks to Urso, so I am hopeful!

Good luck and find a routine that works for you,

Hadley

[Hidden in reply to Hadley]

Thanks, Hadley, I take both morning and 12noon, but I will consider taking it as early as 5am instead of 9am, I think that will make a considerable difference.

Glad everything is now under control for you and stays that way!

[sistergoldenhair]

I am taking both of them, 40 mg fureosemide, 100 mg spironlactone a day, I take them around 4-5pm. There are times I am up all night and times I am not. Sometimes it doesn't seem like they are working and sometimes it does, I kind of keep an eye on my ankles, legs and stomach. It seems if I have been on my feet alot, I retain more and it is harder to get rid of it. Just recently my doc said I could take two of the fureosemide on days it seems real bad. Also, although my GP doctor said to cut my water, the prescriptions and my Gastrointerologist said to drink lots of water, it helps flush it out. I try to drink 5-8 (8oz) glasses a day. That does not include a cup of coffee or if I am drinking tonic for cramps. This probably isn't really helping, but your not alone it can be very frustrating and when you are already tired all the time, it's hard when you try and sleep and have to get up all night, so I do understand. thoughts and prayers, cyndy

[Hidden in reply to sistergoldenhair]

Thanks, Cyndy, it does help to hear of others' experiences. Through this feedback I've received, I now will try taking my morning dose much earlier, at 5/6am instead of 9am which I feel logically will decrease my having to get up all night.

I'm allowed 1 1/2 litres in total of water per day inclusive of coffee, soup and food. My ankles are no longer swollen after my liver specialist increased my spironolactone from 50mg to 75mg per day (in conjunction with 60mg fureosemide.)

I hope experimenting with timing of my dosage will help me, maybe you as well?