When is Lactulose recommended?

@hopeful33250 Hi , Xifaxan is more like an antibiotic they use to kill H-Pylori in the small intestines. You know if you have it if you get the Lactulose Breath test sometimes called SIBO test .

I’ve had a few , and been on that RX a few times ( it’s 2 week max being in it ).
I requested to go on it all times even being neg at time for SIBO . I’ve had horrendous digestive disorders fir 7.5 years, 5 Gastro Drs … so many tests, RX , diets. , holistic . No relief. Going for 3 tests at Mayo Clinic Jacksonville Oct 3-6 w/ new Gastro . Long wait to get televisit!! Finally going . Praying 🙏 they can help cure me or something soon . Rosemary….

@rozy288 Hi Rosemary,

I really appreciate the added information about Xifaxan. I am sorry to hear about all of the digestive problems you have had. It really can be frustrating to have digestive problems. It creates difficulty with eating and so much more!

I am so glad to hear that you are being seen at Mayo. I look forward to hearing how that appointment goes. I hope that it gives you some more information and some help.

If you don't mind sharing, what is the most difficult digestive symptom you have right now?

@hopeful33250 Hi , Xifaxan is more like an antibiotic they use to kill H-Pylori in the small intestines. You know if you have it if you get the Lactulose Breath test sometimes called SIBO test .

I’ve had a few , and been on that RX a few times ( it’s 2 week max being in it ).
I requested to go on it all times even being neg at time for SIBO . I’ve had horrendous digestive disorders fir 7.5 years, 5 Gastro Drs … so many tests, RX , diets. , holistic . No relief. Going for 3 tests at Mayo Clinic Jacksonville Oct 3-6 w/ new Gastro . Long wait to get televisit!! Finally going . Praying 🙏 they can help cure me or something soon . Rosemary….

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

Hello, my autistic, epileptic daughter, post sigmoidectomy 2024 with many setbacks, sees her neurologist tomorrow
She is on Lamictal for seizures, Seroquel and buspar for autism, behavior but still 3x day lactulose with Miralax only in am
Recently antibiotic for bronchitis
Thoughts on continued lactulose , she has a stool usually every other day, but how safe is it ?

@minajo - I wanted to let you know I moved your post here to where other members were talking about lactulose:

- When is Lactulose recommended?https://connect.mayoclinic.org/discussion/lactulose/

Hoping members such as @tupelogirl52 @gloria811 @rozy288 @clutch and @hopeful33250 will have some input for you on lactulose.

I'd be interested to know if her neurologist has any input about this medication at the appointment tomorrow or if your local pharmacist has some thoughts, if you'd please post some information on how that goes?

We saw neurologist yesterday, discussed seizures , antipsychotic, those important meds with her autism, epilepsy,
I mentioned lactulose but she referred to g. I. I want to see how she absorbs meds with lactose
She just finished antibiotics, was off due to loose stools with that so now seeing how she does and if we can back off 3x day to less
We see g. I. in month
For now lactulose has worked best, post op 1 year but taken a long time Thank you all for interest, Lisa is nonverbal so can't describe symptoms.

@minajo - thanks for the update on your daughter. Glad you got some of your concerns addressed by the neurologist. I hope your visit in a month with the gastroenterologist is also productive.

I also wanted you to meet @jodeej @jeanne5009 @gaylea1 @amyintucson @kltchrmn who have mentioned lactulose in different discussions on Mayo Clinic Connect, who might comment on their experiences with taking lactulose on a continued basis.