Xifaxan

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!!

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..........

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.