Rifaximin (new poss lactulose replacement for preventing episodes of overt hepatic encephalopathy.

[H1ghtower]

Eyup guys, anyone ever tried or been offered the above antibiotic thats been NICE approved? Been told its £260 cost to nhs which is enough to make it an individual surgeries discretion to purchase.

[AyrshireK]

Hubby was put on this at the time of his transplant assessment owing to a 'suggestion' of HE (confusion issues) it hasn't replaced lactulose - works best when both are prescribed together.

His symptoms haven't really progressed further than occasional confusion, memory issues. Don't know whether it would have progressed further without the rifaximin.

At first our local GP said he couldn't prescribe it, saying it was a specialist hospital prescription but after a discussion with TP unit he started prescribing it on repeat.

Katie

[H1ghtower in reply to AyrshireK]

Cheers, katie. Nice to know you,e still around, love!

[jillian65 in reply to AyrshireK]

We have had very much the same response Katie. My husband has only just begun to get it on repeat from the GP after months of asking for it from the hospital each time he went in for a drain.

[pear-shaped]

My husband was prescribed it with lactulose too... It did take the edge off his HE...

Pear

[jojokarak]

I was put on it after my last hospital visit 10 days ago, and in that time i have noticed a difference i feel so much more clearer headed i still have to take lactulose as well but i have been able to reduce dose i was on 40ml 4 times a day i am now on 20 ml 3 times only downside about rifaxmin for me is swelling on legs and ankles and stomach.

[scotty40]

Hi there, yes I was on rifaxamin for sixteen months before I could stop taking them. At first I couldn't feel the benefits but I stuck at it and eventually I did. It is usually for at least 6 months. It helped me to get back to doing normal things. A brilliant drug. The so called miracle drug.

[scotty40]

I couldn't get it from the go. Had to go get it from hospital. Sorry.

[PCBnPBC]

H1Tower, I am now 6 months post transplant, but before transplant I suffered very extreme bouts of H.E. "madness" - I was without normal logic which meant I forgot names, words, in fact anything - I had (on an extreme day, it certainly came and went) almost no inhibitions, - so example of what I really thought to be funny was walking round a department store singing "Oh touch me up, buttercup..... baby" I dont think I upset too many shoppers, and I had a great day! My wife now looks back and laughs with me... and there are so many (worse) examples... anyway to Rifaximin, it really helped for a few months, then the beneficial effect seemed to tail off, I used Lactulose alongside Rifaximin. Perhaps I would have been even worse when the effects seemed to tail off, and thus perhaps they continued to help as I got worse? My wife is 100% convinced Rifaximin made her life possible. Has anyone heard of LOLA ??

[H1ghtower]

Thanks guys i know i always have you on this site to fall back on. I can beat that, PCB.....At 40 years old i was forcibly "sectioned" by police for the first time in my life about 3 years after being diagnosed child c as i hadnt left the house and still havent for over 3 years and had to paint windows and shut windows to stop my pathetic landlord making fun of me and tormenting me literally at least 4 hours a day for 6 months and had to set fire to carpet before hed let up. He is an unpopular person i met whilst working at Halifax bank and guess it was his way of elevating himself as a funny person to the crims outside who where shouting things from a distance like girl and puff etc which riles me still as ive never backed down from a fight in my life and they had to wait until i was half dead before theyd even shout from a distance! im 6 ft 5 in and 17 stone and My landlord phoned the medical people when i snapped after having to suffer the indignity of humouring a 5ft 4in little p@&f whilst he satisfied his own being alienated issues. so he could show off. I got 2 weeks in a manchester nuthouse and i can honestly say i loved it in there compared to here and i slept soundly right from the first day as i felt safe there! I didnt compromise my principles when the cops where here and everything i told them was 100 percent true with the landlord telling mainly lies. What nobody knows is that he more or less begged me to come back after the 2 weeks and even talked me out of applying to go back voluntarily...and they wonder why i,m confused!