Hi, @clutch I used Lactulose prior to my transplant due to HE episodes. It was prescribed for me initially in my local hospital but when I went to a hepatologist at Mass General, my transplant hospital, she prescribed xifaxan which I was able to take without the need for lactulose. Eventually though my liver worsened of course and my HE episodes resumed. With xifaxan alone I went about 9 or 10 months with no HE episodes. When HE resumed I had to add lactulose back in along with xifaxan.

Xifaxan apparently works differently than regular laxatives. It somehow helps to flush out the bacteria that go to your brain and cause the episodes.

Next week it will be five years since my transplant and I am not quite sure exactly what it does differently but I do know that other laxatives do not operate in the same way. If there were other laxatives that would do the same I am sure they would recommend them. I do not believe you can get lactulose OTC. It was NOT a very expensive drug with my insurance, vs xifaxan which was quite costly. I think depending on your income you can get various grants to help with the cost of xifaxan but we were paying about $700 a month. When you are on Medicare as I was and paying that much though, you get to the "donut hole" fairly quickly and the cost goes down considerably. I don't remember exactly what we paid when I hit the donut hole but I think it was less than $100 a month.

Lactulose is one of the very few drugs that the patient has to titrate themselves. I found I generally took about 32 ml 3 times a day but some days that wasn't enough and I had to take more and some days it was too much and I decreased how much I was taking. I suspect that has something to do with what I had eaten and how those foods affected me.

Please feel free to ask anything about this you want. I am not on Connect every day but I will get back to you. I think I am one of the Connect mentors who has the most experience with HE and these drugs.
JK

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