Xifaxan may be working

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New Member

Date Joined Apr 2009
Total Posts : 5
   Posted 5/4/2009 2:58 AM (GMT -7)   
My mom had ammonia level drawn on Saturday and results were down to 73 from 135 on Tuesday.  That is with only 30 ml of Lactulose from Thursday to Saturday.  She was acting pretty foggy on Friday so had her take the Lacutlose just in case - I didn't want the ammonia to get any higher.  But was shocked when we got the results back that her ammonia was actually down.  Does anyone know if it takes a while for the body to readjust to being lower.  I am not sure why she was still acting so foggy.  And she is so sleepy.  If anyone has any ideas on what would be causing the sleepiness - she is ready for a nap almost as soon as she gets up from sleeping all night.  I don't think she sleeps all night but I think she sleeps most of it.  I thought it was the ammonia level being too high.  Of course 73 is still about twice as high as it should be but much better than it was. And she is not having constant diarrhea - thanks so much for this great website.  So far the Xifaxan seems to be working.  Now I just hope the doctors office can get it authorized for the full 30 days.  I am hoping that this will allow my mom to have a good summer.  Without constant diarrhea I am hoping we can keep her hydrated and her electrolytes where they should be.  They had her on Magnesium 2400mg per day and now her Magnesium level is above normal.  So cut her down on that - they also had her on Vitamin 20,000 units per day and doctor had her stop that entirely.  On one website I was on it said that too much Vitamin A can be toxic to the liver, but I do think it is for long term usage and she was only on it for about 4-6 weeks.  Glad to see a few pills go away though.  I know it is hard for her to swallow them all.
Anyway I am hoping that if her ammonia can get down where it should be that she will start to feel better and can get some strength back and have a good summer.
Thanks for being here!! smilewinkgrin   

Pink Grandma
Veteran Member

Date Joined Nov 2006
Total Posts : 2445
   Posted 5/4/2009 7:05 AM (GMT -7)   
Hi Catz, I am so glad her levels are coming down. And yes it can take a while. There were times when my husband's levels were about at that same level 70's and he was more goofy than when it was at 140. She's probably going to feel tired a lot. It's part of the disease. But he confusion should lessen. I sure hope she can get a 30 day supply.

Take care......thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2009 9:41 AM (GMT -7)   
I'm also glad to hear that the Xifaxan seems to be working.  As PG noted, the fatigue and sleeping are just part of the disease.  (Ex:  I got to sleep last night around 12:30 AM and just got up at noon...which is actually early for me.  That's 11 1/2 hours of sleep.  And I could go right back to bed and back to sleep if I allowed myself to.  I force myself to stay up and do things.  When I get up earlier, I then cannot keep my eyes open in the late afternoon and have to take a long nap.)

Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Regular Member

Date Joined Mar 2009
Total Posts : 71
   Posted 5/4/2009 10:59 AM (GMT -7)   
Yes, the same here. It usually takes my MIL about 4 or 5 days before she is less confused. She had blood work drawn today, and we should know what her ammonia levels are tomorrow.

I'm so happy for you and your mom that the Xifaxin seems to be working. I will keep praying that you get some assistance with the 30 day supply. Keep calling and being presistant and it will pay off. Even contact your pharmacy for advice, sometimes they can be very helpful. Good luck.
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