Hmmm very restrictive criteria Chester. And it must only be prescribed with Intf & Riba on the PBS – not helpful

Hang in there em, I’m sure there’s a combo out there which will work. Lots of knowlegable people on here all looking our for you.

Great to hear it Cindi, only two days and you’ve seen such positive results – I’m sure that J will do well. I can only imagine the hell you’ve been through watching your child get sicker, and even worse knowing that there is something out there which can help him, and which the establishment refused to help you obtain. What a chance we have all been given through the club and Dr James’ compassion…a sad indictment on the system when you are actually taken by surprise by that fact.

Unbelievable, LG – “we are not concerned with symptoms”

Then what the hell are they there for, just asking! (apart from drawing a salary under some kind of bizarre false pretences)

This is really /headdesk material…honestly I have so much respect for you and fellow sufferers in the UK, enduring such patent ridiculousness, from the people who purport to have your medical interests at heart. For all its shortcomings, thank god for the aussie system which hasn’t sunk to such depths of stupidity, and I hope it never does.

Edit: Well said, dointime. We need to help get the word out as widely as possible.

You said it Paul.

Easy for the medical profession to say “just wait” when the patient is merely a set of numbers on a printout…not so easy to tolerate that response when you are living everyday with symptoms and the uncertainty of how rapidly the disease will progress in future.

Adding my thanks here for your tireless efforts Dr James, and ‘kicking against the pricks’ as the saying goes.

Seems like all the motions are being gone through at official levels, minus any meaningful conviction to effect change or trying to make a real difference. Your suggestion of following the Kiwi model to get some few meds successfully beaten down in price and approved so at least to get the ball rolling….well the fact that this fell on deaf ears when there are so many in urgent need is a bit of a damning indictment on the system as it exists at the moment. Thanks for going in to bat for common sense and the benefit of a socially maligned population. As you point out berrinice, we are all too easily written off in both the public and politicians minds.

Think you may be right there, Chester. I tried to register on the AHCS forum before I found out about fixHep C, to no avail…my registration disappeard off into the electronic ether never to be seen again.

And a good thing too, otherwise I might have stopped searching and never found this wonderful site. So, all props to her apparent paranoia and control-freakery on that score lol

Very close friend was on Sutent for metastatic kidney cancer and he had the most vividly disturbing, violent dreams – like horror-movie disturbing. He is now on another new type of chemo and no more crazy dreams. It wouldn’t surprise me if other meds had an effect re dreaming.