Has anyone been to the Royal Free? Also about 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?

[jenniwren]

I was treated at the Royal Free for a couple of years. I did not get on with my first consultant but found the second consultant, Dr. O'Beirne, lovely and caring. There is quite often a long wait at the hospital so don't expect to be seen at your appointment time. There are a lot of specialists at the hospital and they do know what they are doing. I've not heard of eltrombopag but am interested to hear anything you find out as I run a low platelet count.

All the best

Jenni

[papataal]

I have been with Royal Free since June 2008, had my transplant in 2009, I can not say enough about how good the consultants are there, I even went over to the USA to look for treatment, but found the Consultants here far more superior, I also was referred to Dr O'beirn, they are all very good, be prepared to wait at clinic times. Also the Coordinators at the time were excellent, they always kept an eye on your progress The down side I found recently is the the nursing service is a little lacking, the service seems to have dropped some in the last few years, there are a couple of very good nurses, but some not so, I think that just reflects what is going in the NHS. Overall I am very happy with the Royal Free.

Best of luck, and if you need any more info, just post here I will get back to you!

[aamna65]

I was admitted to the Royal Free late December and discharged in mid January, with Auto Immune Hepatitis. I saw a number of Doctors and Professors and they were all extremely nice and understanding, if there was something that I could not understand they would always take their time out to explain, the nurses were good and friendly, there were many patients who were referred to the Royal Free from outside London, because its a good hospital, obviously like any hospital the food is not great.

[Bolly]

I've no experience of electrombopag but do know a number of people on treatment for hepatitis C who have been give EPO or erythropoietin which I believe is used to boost low Haemoglobin/platelet production. It gets a bad name for use within the professional cycling movement.

The people I know who took EPO while on treatment had varying experiences, like we all react to drugs differently. It generally took a while to work - a days/weeks rather than hours. Some felt better for it, some had side effects. But for those who coped with it it enabled them to complete the treatment rather than having to be taken off.

Mode

[pear-shaped]

Thank you for all your comments. We are seeing the Haematologist this week, should get some feedback on the drug. We are still waiting to hear from the Royal Free...

I will let you all know how we get on...

We seem to be on a 'wait' for his liver to pack up and then get a transplant - the Hep problem will still be there though

Atleast this way we've got a chance to: raise the platelets - treat the Hep - then...maybe... save what little liver he has got left...

Thank you all again - and I do promise to keep you all posted about the progress of his treatment.