Refaximin

[pear-shaped]

Hello,

Has anyone taken Refaximin??

[dawks]

I was advised by my specialist liver team to try and get my Gp to prescribe this, but was told it was blacklisted in my area.

[pear-shaped]

Oh dear... My GP refused to prescribe it Not sure what to do?

[dawks]

i think its down to the cost and the number of people it will help...so in my opinion they can help more people for the cost of this medication and those that need it have to carry on with Hepatic enc and the weird things it does to you..

[pear-shaped]

The hospital tried to get the GP to prescribe it - they refused - now we have to pick it up from the hospital...

We were told he would be listed for transplant - now he has got to take this till his liver worsens

Thanks for clarifying it...

[dawks in reply to pear-shaped]

i think i will have to ask the hospital to prescribe it for me also, i am pleased that you managed to find a way round the normal system. I gives me a hope i may be able to do the same..

How bad does his liver have to be??its really bad management to tell you one thing then change your mind, i bet that has effected you both??

I am really fed up with feeling ill.. i have started having some of the tests to go on the transplant list and have other dates booked in then someone else willdecide my fate..

[pear-shaped]

You have to be pleasantly persistent! Try to get you hospital to prescribe it - you need a clear head before transplant - especially when you have to make choices etc...

Chase up appointments - don't just wait for them to come... He gets a review in about 6 weeks and US scan every 3 months - if any sign of cancer appears then he will be put on the list - I guess :/

You have to be under a certain score - Pugh score. My husband is on the actual border line - which is why they have decided to wait. Also they have asked him to stop smoking... Got an appointment for that... Let's see what happens

[dawks in reply to pear-shaped]

Thanks for this useful information.

My Childs Pugh score was 11 a Class C which means a transplant is required, on another scoring system UKELD my score is 59 and on MELD was in the worst case scenario.

My head at this time feels like im on a boat, very light headed and feel dizzy when i stand up and walk about.. i am on lactoluse 30mg 3 to 4 times a day to try and clear the toxins, it worked for a while but i have felt like i do know for the last two weeks.

I hope he doesnt have to get that ill before he goes on the list. I know what you are going through and hope all turns out well..

[pear-shaped]

I think his score is 9/10... not 100% sure...

Do try and get this med well before - I did ask - they said it doesn't affect the liver You sound like my other half... He gets very confused and gets very stressed...

Take care - keep us informed of how you are getting on - and I hope that you also get some positive progress

[dawks in reply to pear-shaped]

thanks and likewise, i hope things get better for your husband.

[Sheana]

I was lucky to get it from Hospital. Took it for 3 months and then had an EEG which showed no signs of encethalopathy. So it had a very positive effect on me.This medicine should be more widely available. Issue is cost and postcode lottery.

[pear-shaped]

Thank you

I have asked my GP - and he says 2 things 1= cost 2= management. They don't know enough to manage the side effects etc...

You post has given me lots of hope - my husband is only just forgetting things, non stop waffling and some physical effects - so they say the drug will work as he isn't too far gone with his encethalopathy... Once he gets started, I may start posting about how hes doing - like you say it should be available more...

Thank you again,

Pear/S

[pear-shaped]

That should read.. Your post...