Lactulose question

Posted by jodeej @jodeej, Apr 8, 2018

I’ve seen that several of you have taken lactalose (not sure how you spell it) while awaiting transplant. My husband is having some HE symptoms, but wants to work as long as possible. Is it possible to take lactalose and still work? I don’t want him to take it, go to work, and then have bathroom issues.

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@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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@amyintucson Mayo is of course a great place to be. Do you know your MELD? I hope you won't have to wait too long for that magical call.
JK

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@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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My meld is low – I get an update tomorrow – but there are other complications that are of concern to doing the surgery so we will see.

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@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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@amyintucson I find the MELD quite confusing. Some people seem really, really sick but their MELD is in the teens and others seem to be doing better but their MELD is in the mid-20s at least. I guess if it's low you are not in jeopardy.
JK

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@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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@amyintucson Hello Amy. I used to live in Tucson for 20 yrs. I lived in the Eastside Pantano area, and mid-town Swan area. My cousin who now lives in Green Valley has Sarcoidosis also. I hope you get your transplant and that it goes smoothly. You are in the best hands that I know of, Mayo Clinic.

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@amyintucson

I use both Xifaxan and Lactulose. I think everyone's costs are different depending on insurance – I pay $175 for a 90 day supply of Xifaxin and Lactulose is $10 for a 30 day supply. If I stop taking either one, while my digestive system may feel better, my husband can see the difference in my concentration.

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@windwalker – small world. I live on the eastside of Tucson near Camino Seco & Wrightstown Rd and my sister lives near Speedway & Pantano. Sarcoidosis is a strange disease. I know someone who was diagnosed with it in the lungs in the mid-80's with little to no symptoms to date. Mine showed up fast and furious in 2008 in the liver with only a small stable nodule on the lungs, but the liver has been a constant source of concern. Does your cousin have active symptoms?

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I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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@mikejones

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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@mikejones: what is the name of the lactulose alternative. I am so sick of taking it 3 x daily for the past 18 months. Sometimes I feel sick trying to swallow it even if I mix it with juice. It is messy and the gas embarrassing.

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@mikejones

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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Kristalose is the only powder form of lactulose.

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@mikejones

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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@mikejones I sure wish that had been an option when I was taking the dreaded lactulose. After transplant, when I was still in some pain (really the pain was only the first few days) my husband would cheer me up exclaiming “NO MORE LACTULOSE”. 🙂
JK

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@mikejones

I took the lactulose ready-mixed syrupy liquid for a few months. It was inconvenient, messy and produced large amounts of gas that was embarrassing in public. Inexplicably, my wife was quite intolerant and disgusted by this. The cramps were somewhat debilitating. For convenience, my physician switched me to a powder form that mixed with water or other drink. Portability was much greater, tolerability was better without the thick syrup and flatulence and cramping were significantly reduced. Taste was better. I said, "Where has this been all this time?" I suggest he ask his physician about this version. Comes in one-dose packets ready to dump in any drink.

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@mikejones thank you so much for sharing. I am going to ask my doctors about this.

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I have been using the Kristalose – powdered lactulose – for a couple of weeks now. It is so much easier to get down and I do not dread taking it like I did the syrupy version. It is more expensive, but well worth it for me as I take it regularly and it transports easier than the bottle.

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