Has anyone experienced Hepatic Encephalopat... - PBC Foundation

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Has anyone experienced Hepatic Encephalopathy and being treated with Lactulose?

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littledragon23 profile image
littledragon23

Hello nataline,

I experienced mild hepatic Encephalopathy last year and have been treated with lactulose since. My ammonia levels were very high during the summer, but have settled with the Lactulose. I do believe that my diet helped as well. I am mainly vegetarian , but during the time my levels were very high I kept a vegan diet. However, what exactly would you like to know in regards to the Lactulose?

Hello littledragon23,

Thanks, for your reply.

I'm trying to find the right balance of doses to maintain a quality of life. I've been instructed by the Specialist that it is imperative to have 3 to 4 bowel movements per 24 hours. She has prescribed 30ml of lactulose every 3 hours to have this result. Once this is achieved within the day, I can refrain from taking the remaining doses for that day and to resume the process the following day. This is causing me to make trips to the toilet in the middle of the night and odd times during the day, needless to say, cannot do much planning.

What is your dosage and have you achieved the right balance to maintain a regular lifestyle?

littledragon23 profile image
littledragon23

Hey nataline,

sorry for my late reply, but I am not online on a daily basis.

I don't know where you are being treated, but I got my specialist in the UK. I was told to ensure that I have 2 - 3 soft stools a day. My Lactulose dose isn't fixed, but a minimum of 50 ml/day. I can see with the way you are supposed to take your Lactulose how this interrupts your daily routine - horrid. I have been told by the liver dietician to play around with the dose and I found that if I take the largest portion in the evening that I do have less problems with bloating, tummy ache and "farting" during the day. With that regime I have been able to maintain the required bowelmovements/day. It also helps to maintain a high fibre diet which wasn't that much of a problem for me as I eat mainly Vegetarian anyway. However, when my ammonia levels were really high during the summer my consultant asked me whether I could maintain vegan for a short while, which wasn't that much of a problem either ( I only carried on with "proper" milk in my coffee). In general this works well for me now. I do have the odd days where I am virtually all day on the toilet, which can be very distressing as you know yourself. It was worse when I started the Lactulose as my doctor didn't titrate the dose and I experienced awful abdominal pain, nausea and severe bloating. Again, this kind of settled as well.

Your dose appears to be very high as well. Do you have portal hypertension as well as hepatic encephalopathy and what are your symptoms with it? My highest ammonia level was 290 last year.

However, you may want to try to shift your doses slightly. I usually take 10/10/30 and increase accordingly as required. The max I had was 20/30/50, but I always make sure that I take my bulk in the evening. My doctor said that it is okay to do so.

Hi Littledragon23,

Thanks, so much.

I'm going to try taking a larger dose in the evening, as you do, that may help considerably. I've been recently told that once 3/4 bowl movements are achieved for the day, I can stop Lactulose for that day and resume the next. This was not told to me before and don't really trust it because there would be a large gap of doses between days, although, doctor says it's OK.

I've had an endoscopy to check for portal hypertension, the Specialist found it to be minor and performed some banding for preventative measures but never had any symptoms and still don't. My next appointment is in 2 weeks which makes it 6 months since this was done.

As far as hepatic encephalopathy, it happened twice and both times were mild but due to improper doses of Lactulose. Symptoms leading up to it were nausea, vomiting (once each time) and some hand trembling, treated in hospital both times.

I'm in Canada (Montreal).

ZiggyBean profile image
ZiggyBean

My mother is on lactulose for HE. It is night and day when she forgets to take it.

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