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jodeej
@jodeej

Posts: 348
Joined: Jan 13, 2018

Lactulose question

Posted by @jodeej, Sun, Apr 8 1:37pm

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.

REPLY

@jodeej That's really a dilemma. I was retired already and most of the time I was able to go about my normal activities but sometimes the lactulose just got too intrusive on my life. It wasn't just the having to "go", it also causes really horrible smelling gas. I guess whether or not he could work would depend on how much tolerance his workplace has for bathroom trips. Once "titrated" it is manageable but I did have to monitor my doses constantly depending on results. I presume what you are eating must have some influence on it too. Have you spoken to a hepatologist who could possibly prescribe xifaxan instead of lactulose? That was what my hepatologist did for me. It was initially refused by my Medicare D so she wrote something to them to justify it and then they did pay a large part of it. The actual cost is something around $2400 a month but with insurance our portion was between $700 and $800 a month; a sacrifice for sure but my husband felt it was worth it. The xifaxan, alone, prevented HE episodes for almost a year. I understand you can appeal to the company for a less expensive cost on the medication too depending on your income level.
JK

@contentandwell we are in Rochester and have an appointment with his doctor on Tuesday. We are going to talk to him about it. Hubs was thinking about short-term disability, but would like to stay working as long as possible. That's why I'm asking about the lactulose. I don't know if he'd want to pay for the xifaxan.

@jodeej My doctors insisted on the lactulose as it helps both remove the toxins and clears the mind. It may be gassy but depends on when you take it. I have never found it to interrupt my day and keeps me regular even though I eat a healthy diet. I have for some reason though not able (wanting to) eat meat or fish. I buy all fresh fruit and vegetables and maintain a very low sodium intake. I hope you find something that balances your husband's work/home life.

@jodeej

@contentandwell we are in Rochester and have an appointment with his doctor on Tuesday. We are going to talk to him about it. Hubs was thinking about short-term disability, but would like to stay working as long as possible. That's why I'm asking about the lactulose. I don't know if he'd want to pay for the xifaxan.

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@jodeej When I first got on xifaxan I asked my hepatologist if I could switch back and forth between lactulose and xifaxan, and she said I could. I was figuring that I would go with the xifaxan when I really did not want to bothered with the lactulose, as when on vacation. I got the prescription I think in June. When my husband saw the difference it made he said he thought we should just go with it so we did. As I said, it was a sacrifice, we are comfortable but not wealthy, but it did make my life, and his, much easier. He was worried constantly about the possibility of my having an HE episode and they were very tough on him so the xifaxan really did help him as much as it did me.
JK

@gaylea1

@jodeej My doctors insisted on the lactulose as it helps both remove the toxins and clears the mind. It may be gassy but depends on when you take it. I have never found it to interrupt my day and keeps me regular even though I eat a healthy diet. I have for some reason though not able (wanting to) eat meat or fish. I buy all fresh fruit and vegetables and maintain a very low sodium intake. I hope you find something that balances your husband's work/home life.

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@gaylea1 Are you saying that your doctor felt that lactulose is more helpful than xifaxan? I found just the opposite. I was able to be totally normal while taking xifaxan, no obstacles to living my normal life, driving, and going anywhere. For me it was a Godsend. Many people speak of "brain fog". I never experienced that.
JK

@jodeej

@contentandwell we are in Rochester and have an appointment with his doctor on Tuesday. We are going to talk to him about it. Hubs was thinking about short-term disability, but would like to stay working as long as possible. That's why I'm asking about the lactulose. I don't know if he'd want to pay for the xifaxan.

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@jodeej
Sending Prayers on Tuesday..
Rosemary

Liked by jodeej

@jodeej

@contentandwell we are in Rochester and have an appointment with his doctor on Tuesday. We are going to talk to him about it. Hubs was thinking about short-term disability, but would like to stay working as long as possible. That's why I'm asking about the lactulose. I don't know if he'd want to pay for the xifaxan.

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@rosemarya thank you!

@jodeej

@contentandwell we are in Rochester and have an appointment with his doctor on Tuesday. We are going to talk to him about it. Hubs was thinking about short-term disability, but would like to stay working as long as possible. That's why I'm asking about the lactulose. I don't know if he'd want to pay for the xifaxan.

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I have been on Rifaxin and Lactulose for 2 years. I have mild HE but have found that juggling the lactulose til you get it right works for me I take 1 big slug of it right out of the bottle…lol.. before bed and it works pretty good. PS I usually follow it up with s slug of lemonade…lol

@contententandwell I had been taking lactulose for a year and was just prescribed rifaximin a few months ago. I was instructed to take both. I have to agree that the rifaximin is doing a great job. I do skip the lactulose some days and seem fine. Sorry for the confusion.

@gaylea1

@contententandwell I had been taking lactulose for a year and was just prescribed rifaximin a few months ago. I was instructed to take both. I have to agree that the rifaximin is doing a great job. I do skip the lactulose some days and seem fine. Sorry for the confusion.

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@gaylea1 It sounds like you are doing as well as possible, that's great. I was very happy to be able to do without the lactulose for almost a year because for me it was really disrupting of my life.
JK

Well, we talked to the doctor and Tim's ammonia levels are actually in the normal range. That means his "brain fog" isn't from that. I know this has been on my radar for a few years now and I'm beginning to think that it was caused by the antivirals he took to get rid of his hep c. Does anyone know anything about this or where to get more information?
Thank you,
JoDee

Liked by jerrydrennan

@jodeej , JoDee, Since you are in Rochester, you might find some resources at the Barbara Woodward Lips Patient Education Center. The center is located in the Siebens Building, Subway Level, near the Siebens elevators and the Mayo Clinic Store and the Patient and Visitor Cafeteria. The library receptionist can help you locate hard copy materials. And there is a research librarian who might be able to help you locate information or resources.

https://www.mayoclinic.org/patient-visitor-guide/education-centers/patient-education-minnesota

Rosemary

@rosemarya

@jodeej , JoDee, Since you are in Rochester, you might find some resources at the Barbara Woodward Lips Patient Education Center. The center is located in the Siebens Building, Subway Level, near the Siebens elevators and the Mayo Clinic Store and the Patient and Visitor Cafeteria. The library receptionist can help you locate hard copy materials. And there is a research librarian who might be able to help you locate information or resources.

https://www.mayoclinic.org/patient-visitor-guide/education-centers/patient-education-minnesota

Rosemary

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@rosemarya good call! Hopefully I'll have time to get there before we leave tomorrow.
Thanks for the idea! JoDee

Liked by jerrydrennan

@jodeej

Well, we talked to the doctor and Tim's ammonia levels are actually in the normal range. That means his "brain fog" isn't from that. I know this has been on my radar for a few years now and I'm beginning to think that it was caused by the antivirals he took to get rid of his hep c. Does anyone know anything about this or where to get more information?
Thank you,
JoDee

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@jodeej JoDee, when I was having HE my PCP wanted to do regular tests to check my ammonia level but the hepatologist said it is not a reliable indicator of whether or not a person will have an HE episode or not, that some people whose ammonia levels are high seem to be able to function fairly normally and some people whose level is not high do have symptoms, possibly like the brain fog you mention. Frankly, in my case, I think it would have been an indicator but it can change so rapidly that getting it tested it weekly is not really a reliable indicator if you may or not have an episode. Your ammonia level could be fine one day but two days later go high.
JK

Liked by jodeej

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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