Hepatic Encephalitis

[Peeps7]

My husband was diagnosed with HE last November (he has decompensated cirrhosis) and was prescribed Lactulose. It has not been effective and his specialist has now given him a private prescription for the antibiotic Rifaximin. We took it to the chemist who have to order it in and it will cost in excess of £100 per week. We have been to our GP to see if we can get it prescribed on the NHS and she is waiting for a reply from the manufacturer. Anyone else bumped into this? Any thoughts or suggestions would be much appreciated please.

[jojokarak]

Do you mind me asking why you couldn't get on NHS anyway? Mine was done through NHS. Which part of UK are you

[h0b0]

Same question here. Why has consultant issued private prescription ? My partners was aslo done through NHS.

[Peeps7]

My husband sees his hepatologist privately (lucky enough to have BUPA) hence the private prescription which BUPA don't want to know about! We live in Surrey, whereabouts are you both please? Armed with your experiences, I shall have to talk to our GP again.

[Hidden in reply to Peeps7]

My fiancè and I are in Dorking. Surrey . He has.. HE. . ALD. CA. CIRRHOSIS He is prescribed Rifaxamin on Nhs . I would speak to your GP..

[Urbanblanks in reply to Peeps7]

Do you go to the royal surrey as that's where I go under prof ala

[jojokarak in reply to Peeps7]

Manchester me and I apologise for delay in replying x

[Bermuda1]

Same question from me it was NICE approved for use with HE a while ago now. Sould be ale to get it on the NHS easily .

[Peeps7 in reply to Bermuda1]

Just checked out NICE approval March 2015, this SO helpful thank you I shall be down the surgery on Monday. Watch this space!

[freddie76]

My husband was prescribed Rifaxamin during the trial phase (2006). Since then I understood that most patients in need of it were prescribed on the NHS. You need to speak to Nice to find out if it has been sanctioned for NHS prescriptions.

Good Luck

[freddie76]

Just coming back again.

Why on earth are you paying privately.

You would have no problem with decompensated Cirrhosis to go to a NHS Transplant clinic.

Your best would be Kings College London.

Just ask your GP for a referral.

The private patients in Kings got exactly the same health treatment, with the same Hepatologists, you just get better wards. You should be keeping this money for later when he is "better" . To spend on getting back to normal life again.

The only times we have gone private were when we weren't prepared to wait for our turn on the waiting list for initial diagnosese. Then reverted back to NHS.

We also live in Surrey. Where abouts are you.

[Peeps7 in reply to freddie76]

Since diagnosis we have been seeing our hepatologist at London Bridge who also runs out of Kings. However my husband is 79 and has recently been turned down for a transplant so there is no later on when he will be better, we've already been advised 1 to 3 years, more likely the former. It is more important to me that he has the continuous care he is used to for his last months. We are in Thames Ditton. Much appreciate your help.

[freddie76 in reply to Peeps7]

I am so sorry. Now I am in the picture I fully understand your reasons.

Which Hepatologist are you seeing?.

We live in Chessington. If ever we can be if any help in any way please do not hesitate to contact me. If you wish to do so privately let me know.

I am here to listen or help in any way I can.

I know what it is like to live with somebody suffering HE.

Do you have plenty of help and support family and friends wise?

You do need to have some time for yourself as long as you know he is being looked after.

Speak Soon

[Peeps7 in reply to freddie76]

He's under the care of Philip Harrison who has been wonderful since the onset. Your own experiences sound harrowing and ongoing so I feel for you, it''s certainly a life sentence for us carers too. I might well contact you, if you really don't mind, I have good family and friends but I don't think anyone can fully understand this unless they have been on the receiving end in some capacity. Thanks x

[Peeps7 in reply to freddie76]

Just coming back to you four months down the line ....... despite my husband being established on the Rifaxamin for a few months now, it does not appear to have helped his HE. I am finding it really tough and he is extremely resistant to any form of help apart from me. The thrombosis in his portal vein continues to grow despite Rivaroxaban for the past eighteen months and he is about to be changed to Warfarin. There are varices on the thrombosis which could haemorrhage at any time, so he really does need constant watching. Family and friends are good, he is his own worst enemy and inadvertently, mine.

[carmik in reply to Peeps7]

Hi

Unfortunately the fact that he has HE clouds his judgement .

He will resist anything that he doesn't want to do and you will not be able to alter that. Although my husband is post transplant he still has some neurological issues which they have found is being caused by metal deposits in his brain due to his liver never having functioned correctly from birth, due to his Genetic Condition.

This makes him adamant that he is always right when I have an issue with him over something he has done. Therefore it is probably a similar situation with your husband's HE.

I know it is hard but you need to take a break sometimes and let somebody sit with him.

I see you are only up the road from me . If ever you would like a break and meet somewhere for coffee I am available.

Good Luck.

[Peeps7 in reply to carmik]

Hiya,

Thank you for your reply.

I think it would help to chat if you really don't mind, nobody, unless they've been on the receiving end of someone with HE, understands what we go through.

Is Garson Farm a reasonable place to meet?

Many thanks, Anne x

[freddie76 in reply to Peeps7]

Hi Anne

I am carole I am free this Sunday or Monday at any time you want

You decide if these days are ok for you

[Peeps7 in reply to freddie76]

That would be great Carole if you really don't mind. How about 2.30 Monday afternoon by the exit tills, my number is 07850 912743. Anne x

[carmik in reply to Peeps7]

Hi Anne

That will be fine .Look forward to meeting you.

Carole x

[Peeps7 in reply to carmik]

Likewise, really appreciate this, have a nice weekend, Anne x.

[carmik]

Yes anytime you want contact me

[sandy56789]

It will depend on what your local CCG has said about the medication as to whether your GP can prescribe it. Looking at the local formulary for my area for example GPs are NOT allowed to prescribe it - the consultant at the hospital has to. In other areas GPs will probably prescribe it on instruction from the consultant.

[AyrshireK]

Hubby was put on Rifaximin by specialists and I had to hand a letter in to GP surgery for repeat prescriptions. Initially GP said he couldn't prescribe it saying it was only a hospital prescription, however, he must have done some checks and eventually he rang to say he could prescribe it after all and we now get it on repeat from local GP practise.

Katie

[carllovatt]

did not know about this problem, I just put a online repeat for some more came out of hospital with 2 months worth for HE

yes it is a bugger of a illness i hope also "peeps" you have 'movicol or laxido' it make him g o think of it as dialysis for the liver

[Urbanblanks]

I get rifamaxin from my consultant and he gives me it for 3 months at a time 2 a day and the pharmacy at the hospital dispense it and I sign for it and that's it

[cazer]

why is the consultant not giving him a nhs prescription im getting it from Queen Elizabeth. i know its expensive but if its the only thing that's working then surely he should be having it? best wishes cazer. x

[baby2016]

My husband had it prescribed on the NHS. He had to have it in hospital after developing HE and is still on it now, part of his daily medicine, so it can be done. I hope you get it sorted soon x

[MalcolmCClark]

I think the general answer is get an initial NHS prescription from the hospital and then the GP will just sign off the repeats. Most expensive drugs have to be prescibed by or on behalf of a consultant. I had the same with some of my diabetic drugs. In this case I dont think there is a problem but with some drugs even if NICE have signed off for prescription it still comes down to the hospitals signing them off as well before they can be given. With new expensive drugs coming on the market all the time this will be an ongoing problem. Just talk to your consultant.

[peteingloster]

I was also diagnosed with HE due to liver disease and initially my Rifaxamin was prescribed by the hospital, I am now able to get a regular prescription from my GP; in my case this initially had to be confirmed by my consultant to my GP, she then had to wait for confirmation from her practice manager and I now get a monthly supply via the NHS. Neither the GP or the pharmacy had to contact the manufacturer as far as I was concerned. I even said to my GP about the cost and she said , "You've paid your taxes and NI contributions all your life, please don't worry about that". What I'm saying is don't let them brow beat you, these drugs are for your well being so stand you're ground, best of luck and support.

All the very best Pete

[Peeps7]

Thank you, we had to pay for one month's supply, it was a major battle but my husband is finally on NHS prescriptions for Rifaxamin. Was not prepared to be browbeaten and fought it tooth and nail!!