Still having a battle trying to get Rifaximin prescribed on the NHS, the cogs seem to move so slowly .... so I took the private prescription in to the chemist and we now have four weeks supply for £320! Whatever it takes, that was ten days ago and meantime together with the lactulose, it does not appear to be making any difference to the toxins. Going to try Manuka honey from New Zealand MGO 300, anyone tried this? Consultation on the 7th told the clots in the portal vein are masking liver cancer and my beloved Peeps now has 6 to 12 months and then the follow up letter came on Valentine's Day to say it was more like six months. It's been a real tough week and now friends and family are going into panic mode wanting to visit and stay over etc etc and we both just want to be able to quietly hibernate. Are we being selfish? I'm finding it hard to keep the lid on.

11 Replies

  • Can't believe your having so much trouble getting rifaxamin it's disgraceful, the thing is with rifaxamin it will take a while to get into his system but you will notice the difference once it kicks in.

    Your not selfish at all about wanting to hibernate I always got drained after a ten minute visit, just explain to family and friends that he really isn't up to visitors am sure they will understand.

    Regarding your letter and what they see as the prognosis rip it up and take each day at a time everyone's fight is individual and one things consultants can't predict is our individual strength and will power, we can't and shouldn't live on a time limit anyone of us could go at anytime but we all just live our lives as we want x

  • Hey something so positive! Thank you so much, I really needed to hear that, we've had so much negative garbage in the last three months, this really helps! x

  • No problem at all am glad to be of some assistance x

  • Well said! X

  • Good morning peeps7,

    Who was it who first prescribed Rifaximin for you ?

    If it was a consultant, simply get in touch with your consultant and have a 'hospital prescription' That's what I had to do until my GP passed it on to the local Clinical Commissioning Group (CCG) who gave permission for him to prescribe it. You need to ask your GP to appeal to the CCG.

    If there are clear clinical grounds for any medication being given, then you should be able to have it.

    The National Institute for Clinical Excellence have approved the use of Rifaximin, so there is no doubt that it is an effective and in hepatic encephalopathy, essential.

    The attachment shows how expensive it is, but how much does it cost for a an episode in hospital with a severe bout of HE ?

    Rifaximin combined with lactulose made a huge difference to the frequency and severity of my HE episodes. I went from 80 days hospitalised, spread over 2015 to none by the end of that year.

    You have enough to worry about, without being concerned with local health politics and rationing on grounds of finance.

    Please take care,




  • Hi Jim, thank you so much for your thoughts and very helpful advice. We are seeing Dr. Philip Harrison at the London Bridge Hospital again on Tuesday. We are BUPA and this has been the bug bear, a private prescription. I will go armed with your link as he had said he would see Peeps at Kings on NHS but it's the forever we have not got. Will post again.

  • peeps7,

    You could print the last link and take it to show to your GP.


  • i do feel for you at the moment my mrs is in the QA in portsmouth for a HE episode

    she had 40cl of lactulose injected directly into her stomach by nose tube 3 times a day Xray showed constipation [a deep log jam] she is just awake enough now to take the pills

  • Had the same issue, as I seem to with many of our drugs as they are expensive. My doctors at Addenbrookes sent letters, as with all repeats. Finally my transplant pharmacist called. I've also had my coordinator call for other things. After all, that's what they are for.

    The rifaxin is serious and needed for you hepatic enchalopothy and keeping those toxins at bay. Have your liver consultant/ nurse call your GP and pharmacy and stay on it.

    Those drugs are always expensive and mandatory.


    Cheering you on!


  • my county will no prescriber rifaximin as classed red drug so can only be prescribed by hospital not docs.

    i am on third month now... didn't think it was doing anything in beginning but now think my brain has less fog... sleeping no better and loose tummy a bit worse but overall think its helping. good luck try again think its worth it. xx cazer

  • use your precious time as you see fit put the relations off if he gets much worse than they can help theninstead.... you may be grateful of support at that point but have the vists on your terms and when they suit you.

    I know their relatives but your time together is most important. maybe let them have a short visit but be strict.... good luck. xxx

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