Rifaxamin?

Hi guys hope you are all doing well,sorry to be a pain but I'm a lil lost/confused,my lovely pop's is not at his best just now his legs do not want to do what they should he is very slowly shuffling around,totally drained weak,quite shaky with his hands and feeling very down which is understandable. Although pop's has been like this before recently on our visit to his consultant after reading this site trying to understand/educate myself to try to help my dad the best we can,I mentioned Rifaxamin as so many on here has it with lactalose and it has never been mentioned to us before,I also think he most certainly should have had this at least prior to this episode he is having now. Consultant prescribed my pop's rifaxamin with no hesitation said he didn't need it now but for us to give it when needed which is great I think. My concern is when do I give him this as nothing has been explained in detail to us about HE,only thing mentioned was toxins can go to the brain,lactalose can help get rid of toxins,basically that's it how bad does pop's have to be before I give him this and has anyone experienced any bad side effects with it? Sorry again for this but honestly I feel since there is nothing they can surprosedly do for him they choose to leave us to figure everything out ourselves which would be fine if I were a doctor. All I want is to keep my dad safe and as well as can be,he is staying home with his family we will care for him till his last breath just hate having to figure stuff out medication wise surly it's not to much to ask but I will fight for my dad whatever he is entitled to,so if anyone can give me some insight about when to take these tabs or anything else plz do let me know sorrry for going on & on.

13 Replies

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  • Hi

    Sorry for your dilema.

    My husband trialed Rifaxamin prior to his transplant. He was on it permanently.

    Since then I understand it is now widely used for HE.

    Have they told you how often and at what dosage to give him.?

    If they have just follow those instructions and it does help. What stage of liver disease is he and what age. Just asking as wondering if there is any chance of a transplant or not. If not I would keep him on the Rifaxmin.

    Good Luck

  • I am om refaximin for my HE. Not certain how they measure its efficiency - but it has helped me tolerate the lactulose a lot better. I started taking it at the beginning of February so I think it is early days yet. Good luck!

  • Hi freddie76 thanks for your reply,hope your husband is doing well since his transplant. Rifaxamin prescribed one twice a day they are 550mg. Dad is at end stage liver cirrhosis nothing they can do,he is age 76,had fluid drained a few times I question there diagnoses mostly over cancer,as told him he had 8 months to live I know that this was not set in stone,pop's has past this, 14 months down the line a few episodes of HE but has come out of it,they told him as nodules had grown it was cancer 10 months later dad asked for a scan as he felt strong & was there anything they could possibly do to help him. Scan came back as nodules do not look like cancer they never told us this I found it on the letter to pop's GP,then they said they would not do Tipps as doing it can course HE or die. When we went again to consultant I brought all this up never seen a consultant go so red in all my life.,from beginning after dad was told he had cancer as well as cirrhosis through NASH they couldn't do a biopsy or any treatment for reason his liver to ill & they would only make him worse this is questionable to me. Then after him asking is there anything they can do to help after asking for his last scan they offered him Tipps questionable again,so when we went back spoke over what I needed answers to I was told they are quite sure he has cancer through his blood result ? Not any bloods explained to us ever meaning if high low dangerous ect, so asked for a copy of blood results to try understand them myself then told they won't do Tipps to be honest I know & understand the outcome with pop's but I don't know what to believe I feel his age has come into this big time and even tho he felt strong they won't even try. Sorry again for the long reply hurts so much my pops went to hospital in 2012 over exactly the same problem liver pain & was told it was all in his head so yes I think I'm entitled to question everything but why do I get the feeling I'm overstepping the mark with every question I ask. I only want to take care of my dad as he so deserves Thank you again.

  • So sorry 2 hear all this.

    We had 2 fight a lot of the time

    Which hospital is this and who is the consultant.

    U r entitled 2 a 2nd opinion at a proper liver unit.

    Just ask for a referral they can't refuse

    Good luck

  • Thank you

    It is Aintree Hospital Liverpool,think I will ask for a second opinion,do I ask his consultant for this ?

  • No gp and they must comply

  • Thank you so much freddie76

  • Sorry with your dad , I'm on rifamaxin have been for the last 5 months same amount as your dad I've had bouts of he that's why I was put on it and lactolouse , I'm also apparently end stage but no cancer , but you sound like my daughter she always wants answers and doesn't get them much but a bit more than I would I'm 60 in a 8 days and tbh I don't ask questions any more had enough of it all for the last 17 years don't beleave what they say though because I was told 10 years was it for me and that was in 99 so you never know , but the tabs help me alot I take them everyday now without fail , also he's your dad so always keep on keeping on , love and best wishes to the both of you bri .xx

  • My hubby had been on it permanently since June 2014 and he has never had any serious episode of HE just sleep deprivation and symtoms of confusion, forgetfulness, issues with concentration and mild hand tremors.

    Once you are on it I believe you stay on it, it is a type of antibiotic I believe and it works best when taken in conjunction with lactulose to break down and rid the body of toxins.

    Maybe a quick phonecall to GP or hospital consultant to clarify. But, I would have thought he should be on it all the time.

    Katie

  • My husband has been on Rifaxamin now for 15 months. My understanding is that it's a very specific antibiotic that attaaks the bugs and toxins in the ascites fluid in the abdomen etc.

    It sort of rounds up and collects the bugs BEFORE they osmose through bowel wall and get to the brain and create havoc there which is the HE.

    It's heads the bugs off at the pass if you like. At source. It's not 100 percent effective but has made a huge difference.

    Hope this helps and sending positive thoughts.

    Lyn

  • Hi my dad was on rifaximin 550 twice a day with the lactulose and a lot of other meds. He passed away from this awful addiction disease- alcoholic cirrhosis, but I have all his hospitals papers listing the meds he was on. I hope I can help you. I too did EVERYTHING I could for him and had to be his advocate too and figure stuff out, I know what you are going through. I am so sorry. I was able to be there with him holding his hand until the end. Also he wanted a second opinion and had the ambulance take him there to a completely different hospital. Good luck

  • SURE. THESE MEDICATIONS SHOULD BE TAKEN REGULARLY. DOSAGE IS TWICE A DAY. LACTULOSE, UP TO 3 TIMES PER DAY, REGULARLY. NOW( HE )IS TRICKY. AMMONIA LEVEL CHANGE RAPIDLY MANY TIME THROUGHOUT A DAYS TIME. THE HIGH OUT OF RANGE VARY FROM PT PT (AMMONIA). ITS NOT A MARKED LEVEL FOR SYMPTOMS, IT IS A SENSITIVITY ISSUES TO AMMONIA OF THE PT. WITH THIS BEING SAID. THESE TWO SHOULD NOT BE TAKEN AS NEEDED, BECAUSE OF THE SO CALLED RAPID CHANGE IN OUT OF RANGE SCORE. ITS NOT TO BE GUESS UPON, BECAUSE INTERMITTENT DOSES DOES NOT AND WILL NOT COMPENSATE SYMPTOMS. IF YOU DONT UNDERSTAND, AS YOUR DOCTOR. LET HIM READ THIS ADVICE. LET ME KNOW HOW IT GOES. GOOD LUCK. NOW YOU KNOW TRUTH.

  • I have been trying to get the Drs in south Africa to prescribe Rifaximin for me husband for his H E bouts. They don't now about it and when I googled it they said it is not available in s.a. It is a

    pity as he only uses Lactoluse. No antibiotics are prescribed. I do feel lost.

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