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4catzlover
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/30/2009 3:20 PM (GMT -7)   
Hello everyone,
 
I just wanted to post that my mom has just started Xifaxan today - the doctor is having her hold the lactulose for now and start Xifaxan and see if that helps at all.  So far she has taken two doses and no type of reaction yet so we will see if it helps anything.  Her ammonia level was 135 Tuesday when she had her last blood draw.  But at least currently no UTI so that is good.  She has not been feeling well and is very sleepy all the time because the ammonia is high but she still is quite alert and not too foggy when she is awake.  It is getting so that she is more clear minded even when the ammonia level is high.  Does anyone have any idea why she was more confused when it was lower at the beginning than she is now that it is higher??  Does it mean that her body is just getting used to dealing with it and is compensating for it??
Anyway - back to the Xifaxan - the insurance will only cover a seven day supply so called the doctor today to see if they can try to authorize the full month.  The doctor was pretty impressed with what he read on it so he was very anxious to have my mom try it - he knows how horrible the lactulose is - he also wrote her a script for Kristalose so if/when she is back on that we can try that brand instead of the Constulose.  Thanks so much to everyone for sharing the info - I am hoping and praying that this will help my mom - it is so hard to see her like this.
Thanks again!!

AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 4/30/2009 4:41 PM (GMT -7)   
I know that when my MIL was in the hospital, they had her on both the Xifaxan and Lactulose. Together they seemed to help her quickly lower the Ammonia levels. So you may want to ask if she should be on both. In our situation they didn't discharge her home with the Xifaxan, only the lactulose. I guess the both of them together gave a jump start if you will. But I have noticed that lately she has started to show some confusion. She told me today that I needed to pick her some store brand vanilla cereal. I replied vanilla cereal??? She said, "NO thanks, I ate already" We have an appointment on Monday for blood work, so I'm sure that her Ammonia levels are going to be elevated some. But, like your mom, she seems like she is able to function pretty well, during the day, she just has a few moments that aren't so clear.

Good luck and I really hope it works for her. Keep us posted.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/30/2009 6:02 PM (GMT -7)   
Hi Cat, If her insurance company won't pay for anymore........google the manufacturer and get a phone number and call them directly. Tell them that she can not afford it and her insurance will not cover it and that she needs it desperately. Sometimes manufacturers will give it free to hardship cases..........it's worth a shot all they can say is no.

My husband had to take both lactulose and xifaxan. He was on Xifaxan for the last 6 months of his life. He developed the MRSA that highly resistant staph infection from being in and out of ER's so much. It worked wonderful for him. He didn't have a problem with the encephalopathy once that got into his system.

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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/30/2009 7:39 PM (GMT -7)   

Did the doctor specify how long she should be off the Lactulose?  It seems to me that people are generally on both the Xifaxan and Lactulose.

about the Indigent Drug Program:  You can find out who the manufacturer is, but your doctor's office will need to call them.  They will send a form to be filled out by him, or ask that he write a letter stating that the patient needs the medication but can't afford it.  They will then either send the med to the doctor's office for him to give to your mom, or they will send her a coupon to take to the pharmacy to get it free.  Here's a link to more info on the program:

http://www.top5plus5.com/Indigent%20Drug%20Programs.html


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


4catzlover
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 5/1/2009 3:08 AM (GMT -7)   
Thanks for your responses - everyone is so nice here and always has good information.  Hep93 thanks for the link on the indigent drug program - I will check that out if the insurance won't approve it.  I am just glad that they will at least allow her the seven days so that we can see if it helps, then if it does hopefully we can get it to be covered.  According to what the doctor was reading it said the Xifaxan was a cross-over from the Lactulose so that is why he is trying her on just the Xifaxan first.  He is having her take it for two days and then having her ammonia level tested and then seeing how it is going. I did tell him that most people that were taking it sounded like they were taking lactulose also, so I guess we will see - it just worries me that with her ammonia already high that a couple days without lactulose may be too much.  But this new drug gives me at least some hope - I was starting to feel that there was nothing left and my mom would have to wear out her body with the lactulose and then diarrhea and then drops in her electrolytes and becoming dehydrated. 
 
Pink Grandma - did your husband take the Xifaxan every day for the entire six months??  I appreciate any info you care to share.  As I said before when we were told about the cirrhosis years ago we had no idea what it would mean.  They say it like it is nothing and even now I don't really know if she is end stage liver or not.  I have not yet had a chance to try the MELD score - the lab has messed up something so she has not been getting copies of her lab results.  It is all so scary reading it - I cry most of the time as I read through it.  But enough of that I just am glad that maybe there is hope that she can feel a little better and be more clear headed and not be in the bathroom all the time.
 
Thanks again to everyone - I appreciate any tidbits of news on this whole thing and things I should watch out for or websites I should visit - I do want to be informed and not wait until it is too late. 
 
Thoughts and prayers to everyone.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/20/2009 9:50 AM (GMT -7)   

Hi, Adain.  I see this is your first post.  Welcome.  What brings you to the Hepatitis Forum?

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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