Has anyone been/had treatment at The Royal Free? Also has anyone used eltrombopag?

[pear-shaped]

My husband is going to be referred to the Royal Free for Liver treatment. Has anyone got any experiences... Good or bad? A little worried about it :\

Also has anyone been given eltrombopag? How did you get on?

[Liverlover]

I get my treatment from the hepatology team at the royal free. I think their consultants and registrars are really good. Some of their consultants are well known as leading specialists who also take private patients at a private hospital, the wellington. i have always felt confident with them. The more you put in in preparation for consultations by reading the guidance on the trust's website and making notes of your questions, the more you get out. Good luck.

[pear-shaped]

Thank you, I will keep posting updates on how we get on... We have got a tiny ray of hope with this drug... very tiny and mostly maybe...

Reading about all these different cases, you realise how people cope with so many different problems and conditions. Also it gives me alot of support.

Take care.

[Bolly]

Pear-shaped there is a good support forum for people with Hep C at hepcnomads.co.uk. A few of the members there have treated or are being treated at the Royal Free.

Sorry to hear your husband relapsed after treatment. As a Geno 3 there are not a lot of treatment options - Geno 1s now have the Triple Tx with protease inhibiter along with interefon/riba as a different combination of drugs. Treating a Geno 3 again just means using the same drugs, something I would recommend asking questions about and researching - if he didnt respond the first time there's a high chance he wouldnt respond again. Something would need tweaking first: the riba or interferon dosage, his diet, weight etc. Just taking the eltrombopag would, I presume, be a short term fix for his platelets,for example its used before surgery in patients with cirrhosis and low platelets as an alternative to transfusion.

Re the transplant situation, there are many more people waiting for livers than there are livers available, so yes it is a case for most that you have to be pretty sick before you get to the top of the list. Is transplant something his medical team has raised - there is a lengthy assessment process as far as I know. Yes you are right the hep c would still be there. Again, there are a few people who post on the above forum who have had liver transplants and then successfully treated the hep c.

Its horrid waiting around while you worry that things will get worse. I suggest doing as much research and question asking as you can about the risk/benefit of treating a Geno 3 a second time with the same meds.

[pear-shaped in reply to Bolly]

Thank you for all your support... We have an appointment at the Royal Free (at last :)!) at the end of this month... sometimes you can become quite desperate that you do not want to question anything in fear of losing the slight glimpse of hope that has appeared... You have put us back on track ... Thank you

[pear-shaped]

Thank you for all your support... We have an appointment at the Royal Free (at last :)!) at the end of this month... sometimes you can become quite desperate that you do not want to question anything in fear of losing the slight glimpse of hope that has appeared... You guys have put us back on track ... Thank you