has anyone in the UK been started on the sovaldi for Hep C

[ballie52]

Hi everyone

just curious to find out if there has been anyone started on the new non interferon drug sovaldi yet..just read the NHS has delayed the decision to treat for 6mths because of the cost.

I have geno type 4 and have cirhossis and was hoping to be treated ASAP as time is not in my favour to sit and wait for treatment..i can't take interferon due to it not working after 48wks the first time round and having really bad side effects.

it has been given the go ahead from NICE to treat some geno types but not others although the know it works on all geno types with a 90% chance of clearing the virus.

is there anyone here waiting for info on being treated with sovaldi..or anyone started treatment yet?

[cityman62]

Hi,hope you doing okay,I'm a geno 1,my (rather nice),hep c nurse said I might be considered for this new new treatment because I turned down the interferon combo therapy about 18 months ago,which makes me 'drug naive' apparently.I'm due for my usual fibro/ultrasound scan shortly,so be interesting to see what happens then.Doesn't sound good tho,from what you say.....My consultant hasn't granted me a second talk after I turned down the comvential treatment,got the feeling he was annoyed with me.Best to you.

[baillie71 in reply to cityman62]

Thanks cityman..hope all goes well with your next scan...yes geno type 1 is hard to clear although data gathered says all geno types respond to sovaldi..lets just hope we get the same chance as everyone else at getting sovaldi as an option as i have no other chance of a cure if they refuse to fund it!

[cityman62 in reply to baillie71]

I wish you well,this disease is a scourge, and is only going to infect more peeps-i suspect for every diagnosed people,there's probably another 2 undiagnosed, in my county,the biggest infectantive agent is tattoos,although most tattooists change their needles,due to the cost of the inks,they re-use the bottles and hep c can survive in the fluid for some days.So if anyone out their has a teenager,do warn them.

[bunny2be in reply to baillie71]

geno 1 easiest to clear on sovaldi

[bunny2be]

Jjust started 1 week ago 24 weeks 1 sofosbuvir ribavirin 3in morning 2 at night

[ballie52 in reply to bunny2be]

Hi bunny2be..just curious what geno type are you and are you in England?..was hoping that i would be treated by now ...did you have cirhossis of the liver?

[bunny2be in reply to ballie52]

Geno 3 in oz fibro 19.2 ,first test since trial began of viral load tomorrow

[ballie52]

also hope you are coping with the treatment..great news goodluck bunny life has just started..to clear the virus gives you the chance to move on in life.

[bunny2be]

2 weeks of treatment viral load 40 million to 17, 15 is considered clear,LFT's normal,beg borrow or steal to get this

[ballie52 in reply to bunny2be]

Great news bunny...i think i might have to beg at this rate as i have been waiting for this for over two years...but hope they cough up for the treatment as it is not recomended for geno type 4..and i am not getting any better.

[bunny2be]

whats your fibro....got lots of info

[baillie71 in reply to bunny2be]

Hi bunny never had a fibro scan only liver biopsy that showed cirhossis...might ask at my next vist ...they do say it can give a good idea of level of damage...spoke to my nurse and she said it is not being given the go ahead by the NHS right now...also they are having anoyther meeting to decide if they will treat geno type 1and 4 as it needs 24wks treatment and they don't want to fund it ...not fair it should be available for all geno types based on severity of disease...i will be waiting to hear the outcome.

[bunny2be]

biopsy best indication of damage fibro is elasticity anything above 12 not so good my dr expects at the end of the trial i could get down to 14......i also heard people have cleared cirhossis

[bunny2be]

look at hepcnomads website people on trials in uk .....quite a few of them

[ballie52]

Thanks bunny ...maybe look at trials..i did tell my consultant if there was any trials that i would be willing to try any for the new non interferon drugs but not heard about any so far..but maybe have a look at the web site you gave me ..you never know..anyway hope you are doing OK right now...looking good bunny for you good to hear good news.

[bunny2be]

results slow over xmas have cleared at week 2 hepc is undetectable cured! amazing,34 years of it gone in 2 weeks please check out that site,those guys are up on everything