Rifaximin 550mg

[solybananas]

My wife has been put on the waiting list for a transplant, she is under the care at Kings where her next visit to see her consultant at the end of February. She has been prescribed Rifaximin 550mg 2 times a day, which she has been taking it for about four months. Unfortunately they do have some side effects, in her case its having to visit the toilet fairly frequently 3-4 times a day. It has made her very neurotic when we go out, that she will be caught short. So she always travel with extra protection just in case she has an accident. I have tried to reassure her that things will get better once she has had a new liver. has anyone had similar problems with this medication?

[jojokarak]

Tell her it's a good thing she going so much otherwise the toxins are going to build up and drive her loopy I was on double the dose of rifaximin and I still had h.e. and daily enemas and bottle loads of lactose ...

Medication unfortunately works differently on us all individually and even though she sees it as a negative it would of been a positive for a lot of us (I know it's not going to make her feel much better) .

I hope she gets her call soon X

[Hidden in reply to jojokarak]

Jojo I was ditto you. Lactulose did nowt for me. No idea what Rifaximin did - still got HE. Hated the enemas but needs must at that time! Thank goodness for TP.

[Hidden in reply to Hidden]

Snap Miles, abandoned the lactulose and took to eating fruit with total enthusiasm, breakfast, lunch, dinner, supper, nighttime snack. Told the doctors and they were OK 👍. The earth moved for me.

[Hidden in reply to Hidden]

Hehehe well sort of 😁 Result has its Plus points and Minus points!

[AyrshireK]

Rifaximin is the go to treatment now for the prevention of toxin build up and prevention of Hepatic Encephalopathy. Is she also using it in conjunction with lactulose? That is normal protocol.

Going to the loo 3-4 times a day is the desired effect as it is removing toxins, sadly though this need can be sudden and unannounced - certainly my hubby shares the same issue (big style).

We have to plan trips baring in mind access to toilet facilities and sadly the odd accident or dash behind trees, bushes, rocks has occurred on our ventures out and about.

We bought a RADAR key from Amazon for a couple of pounds (you can also get them from local councils etc) and this provides access to disabled toilet facilities for free and avoiding queues in other public loos (where they are indeed available). It is widely accepted now that not all disabilities are visible.

Another useful thing might be a 'Just Can't Wait Card' available from the Bladder and Bowel Community (for free). It allows you to show it in shops or other premises and might gain access to staff toilet facilities should the need arise urgently whilst out and about.

You can apply for this at :- bladderandbowel.org/help-in...

Hope your wife gets her call very soon and that this soon becomes a thing of the past, sadly, hubby isn't on the t/p list just now so it's something we have to keep in mind all the time when out and about. It has at times become very debilitating for hubby in that he'd much rather stay home than go out so that he has his facilities close at hand. He scored points for both ESA and PIP due to this issue.

Katie

[LAJ123]

Hi and have a happy New Year.

Good reply from Kate, especially about the RADAR key.

Like a lot of things, you need to weight up the benefit and the loss.

With Rifaximin, the gain is a much reduced risk of an episode of hepatic encephalopathy and the loss is an upset in your gut. Which as jojo and Kate just pointed out, could be considered a benefit.

It made a huge difference to my pre transplant life. I went from regular hospital admissions, to being well enough mentally, to successfuly go through the pre transplant assessment.

Yes, I also had to leave home with a change of clothes, but it did settle down after a while and it proved to be in the end, lifesaving.

Hope this helps.

Jim

[solybananas in reply to LAJ123]

Thanks for your reply

[Hidden]

Soly, sounds tough but, as you are doing, keep on saying how ectastic she hopefully will be 🤞post transplant. I am and if I could dance a jig I would!

🇧🇧

[Adelou]

Hubby was only on it for a short time before his transplant (as transplant happened quickly)

We just wish we had known about it sooner as had a month with no episodes of HE, he was like his old self again. Yes going to the toilet frequently is a downside but going through an episode of HE is much worse