Refaxamin

[Johnsville1]

Does anyone know how long it is safe to take refaxamin for, I have been taking it for two years now, I haven’t had any HE in that time, I was diagnosed with liver cirrhosis 2 years ago and went into a coma and was put forward for a transplant, but since then my liver has recommpensated

[AyrshireK]

My hubby has been on Rifaximin since his transplant assessment in 2014 - he has a diagnosis of mild HE and no one has ever mentioned taking him off the tablet - he has stable cirrhosis and was delisted from t/p list in 2015. Something to discuss with your medical team (hubby has been on lactulose since April 2012)

[Johnsville1 in reply to AyrshireK]

Thank you for your reply, I will get in touch with my consultant then as I don’t want any more HE episodes as it’s frightening for my partner and I’ll end up back in hospital, it’s like having a mini stroke, so I’ll take your advice.

[AyrshireK in reply to Johnsville1]

You'll probably stay on it as a preventative measure having already had a serious bout. Hubby (thankfully) has never had any serious issue with HE but does have constant issue with concentration, communication, staying focussed on tasks and cognitive problems.

[Johnsville1 in reply to AyrshireK]

Ok, thanks again, I’ll stay on them then as a precaution. It’s just that I’ve been ok for quite a while now and I think I’m ok, it’s probably just my mind playing tricks because I know I’m not, I will speak to my consultant anyway, she’ll probably say I’m being stupid and to keep taking them , after all it’s only one tablet twice a day 😀

[Johnsville1 in reply to AyrshireK]

Did your hubby ever suffer from ascities or varacies or osteoporosis due to drinking, It just shows you how much damage alcohol does to you, I wasn’t an excessive drinker but for the last 15 years it got worse but it didn’t seem to effect my job or anything until suddenly just over 2 years ago

[AyrshireK in reply to Johnsville1]

My husbands liver disease isn't alcohol related - he's life long t-total and his cirrhosis is due to auto immune liver illness. His first came to light due to a massive bleed from burst varices (7 bleeding) - over the years he has had 42 varices banded resulting in them becoming eradicated, he's also had portal hypertensive gastropathy and also aneurysms in his splenic artery due to P/H. He has osteopenia but not osteoporosis (though he is on steroids for his auto immune condition and takes Adcal D3 to protect his bones).Thankfully hasn't had ascites.

Katie

[Johnsville1 in reply to AyrshireK]

Oh, I’m so sorry for jumping to that conclusion, I just thought liver disease was due to alcohol, please accept my apologies.

[bcsurfer]

Hi

I have been on Rifaximin for 2 years. In the early stages it was prescribed for "Brain Fog" and was little short of miraculous. Since then it has worked silently I guess, although my Consultant talked about taking me off it because he felt my need may have expired. I t was decided that I might as well remain on it, but not least of all because it couldn't do any harm.

I have had surgery under anaesthetic for a non-liver related issue a month ago, remained on it, and at no point did the Anaesthetist have any concerns about its presence in my blood stream.

I know that it was originally a discovery for Travellers Sickness and contains a very mild antibiotic. I find some quiet reassurance taking it twice a day and see it as a small "insurance policy" rather than anything instrumental in the management of any condition.

[Johnsville1 in reply to bcsurfer]

Thank you for your reply, I used to suffer from HE up until a year and a half ago which is a very frightening experience, but since being on refaxamin this has stopped, so yes I will continue to take the refaxamin twice a day as prescribed as I never want to experience that feeling again hopefully, thanks again for your reply.

[Tonisha123-mm]

Hi John, I've been taking rifaxmin now for 2 years or just a bit over ,I also have non alcoholic cirrhosis of the liver and had a he episode and they are the most scariest thing I've ever gone through I couldn't speak I couldn't walk I didn't know who my kids and grandkids even were , I had a consultation with a liver speaclist and I raised my concerns of being taken off rifaxmin because I didn't want to go threw a he episode ever again and she told me that I could carry on taking them even though my liver has gone back to normal now and all blood results are good now , before this I had a gastric bypass weight loss surgery and for 12 years I suffered with a very rapid weight loss which presented hypoalbuimena which is a protein to do with the liver and twice now I have been seriously ill and in 2020 I had hypoalbuimena problems again which causes my legs to swell really bad has I also have lymphdema so all this tributed to cellulitis which then turned septic and I was in a coma for a week or so and a month later I was back in hospital due to heptic encalapthy lucky enough for me my cousin was a a nurse at my local hospital and at the time my mum or children couldn't come the hospital due to covid so her being on shift in hospital in the emergency room could tell the doctors that all my past and things other wise I don't think I would of had the correct treatment but HE caused me to be bed bound and having to tell my kids that I may not make it has my liver was so bad I went from being independent to nothing and had to be placed in a nursing home for rehabilitation at 48 and I came back from that and learnt to walk again , I don't know about other people's experiences with HE but it is very scary and my main concern was what when they take me off rifaxmin and it happens again so she said they was no rush to take me off it has yet even though my liver has gone back to being good but even though I'm on them I find at times that I get confused and start talking gibberish rubbish if I've not had enough sleep and I'm so tired or run down I don't know if you experience the same or anyone else who's had HE , I hope you continue to do good and wish you all the best of health ahead

[Johnsville1 in reply to Tonisha123-mm]

Thank you so much for your reply, I have had numerous episodes of hepatic encephalopathy up until about a year ago, I was originally given neomycin which brought me round but had to learn everything again , couldn’t even remember the months of the year, but that tablet was discontinued in the uk and I was put on refaxamin which didn’t work initially but as my liver improved it had made a big difference and I haven’t had any HE for over a year now, but still classed as disabled as I can’t hold down a job in case it returns unexpectedly, but I’ll continue using them as they seem to be working, hope all goes ok with yourself.

[x007jcp]

Hi - my history/ age/experience very similar to yours except never put on transplant list. Rifaximin for 3.5 years. No HE or side effects during that time. Stopped by different consultant to the original prescriber. Expensive drug. No adverse effects six months after stopping. Seems to be debate in medical circles about efficacy. Reason for stopping it wasn't explained. Cost grounds were denied. Hope that helps? Cheers, C

[Johnsville1 in reply to x007jcp]

Yes, that’s great, thanks for the reply, I’ll have a chat with my consultant then about stopping it, because there’s been many times I’ve forgot to take it without any adverse effects, thanks again, keep well.

[x007jcp in reply to Johnsville1]

Hi - if you do stop it be vigilant for gradual mood swings .. if you live with someone ask them to keep an eye on your behaviour. Only stop if consultant says to. Rifaximin believed to be prophylactic so hard to say if it has suppressed repeat episodes that didn't happen. C

[Johnsville1 in reply to x007jcp]

Hello, thank you for your advice, I think I’ll wait to speak to my consultant then just to be on the safe side, thanks again for your reply.

[Astro2020]

I was diagnosed six years ago with stage four cirrhosis and have been taking Refaximin since unfortunately I can’t have a transplant due to other conditions, I have had no problems with the medication

[Johnsville1 in reply to Astro2020]

Ok, thanks for the reply, I’ll probably continue to take it then unless my consultant says otherwise, thanks again for your reply, keep well.