has anyone or do you know of anybody g... - British Liver Trust

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has anyone or do you know of anybody going on the new treatment for hep c

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lippy_lou profile image
lippy_lou

what geono type is the treatment for betty i am about to go on treatmentfor geono type 3

mick1970 profile image
mick1970 in reply tolippy_lou

betty am geno type 3 wae cirrhosis am on sovosbuvir n daklinza n ribavrin for cirrotic liver disease n in 2 weeks av went fae over imillion n a half copys tae 65 copys not one side effect zero av been on ma treatment noo for 8 weeks and am due up there tae get ma 4 week blood results new studys noo show the reverse ae what they used tae say noo geno 3 is hardest tae cure no geno 1 as it was previously in uk anyway a can gie you links write inte aw the big research places GILLEAD SCIENCE ETC infact they no gonnae let me any further tae a gie them a proff registration am no tryn tae scare you am just sayn in 2 wks nae side effects n basically cured ae the virus so stay pozz there is a cure oot there for aw the geno types n the research is beyond belief

Penyfai profile image
Penyfai

The new treatment works best for geno 1 and won't be approved in the Uk until the autumn and then NICE will decide whether they can afford it. The success rate is around 90% for geno 1.

lippy_lou profile image
lippy_lou in reply toPenyfai

hi peny there is new treatment for geno type 3 it has been approved as i have seen my liver specialist i am waiting on a call should be about july the success rate is the same

Bolly profile image
Bolly

Hi Betty, there is a fantastic forum for Hep C patients here: hepcnomads.co.uk/forum/inde.... It's called Hep C Nomads. (You have to do a quick registration to join and post and read other posts). They have people on there on all the different treatments, including the 'triple therapy' that includes either incivo or boceprevir - that's for Geno 1's. They also have people on clinical trials such as Sofosbuvir reporting back on how their treatment is going. I would recommend joining as its the best place to find people on a similar treatment to you.

Tatjana profile image
Tatjana

Bolly I just saw my Heptologist today at one hospital. The other hospitaI (they share me) I belong to are doing a study on my HCV geno 1. We discussed Sofosbuvir and I am in line for it as soon as it is approved by NICE. It is just a waiting game now. My Heptologist also told me there was a 90% cure rate. A little more waiting (over 20

years) won't hurt.

Bolly profile image
Bolly in reply toTatjana

Good luck Tatjana, sounds like your patience and persistence has been rewarded.

Penyfai profile image
Penyfai

Glad to hear there is new treatment for 3 as my partner has that.

lippy_lou profile image
lippy_lou in reply toPenyfai

hi penny its more or less the same treatment with an extra tablet and is only for 13 wks will keep you updated as soon as i get a call to go on it

Bolly profile image
Bolly

Hi Lippy, if its the triple treatment for Geno 1's you are telling Penny about, its only the Incivek (telaprevir) you take for 13 weeks, you have to carry on with the Ribavirin and Interferon for the full course which is 6 months. Sorry if you already knew that, but remember this Triple Tx is (at the moment ) only for Geno 1's in the UK. It doesn't work for Geno 3.

226mt profile image
226mt

I am waiting for the non Interferon treatment for my hep c...i have cirrossis and portal hypertension..it will be available first to people who have more complicated liver disease first then they will decide who needs the treatment depending on the state of your liver..all geno types will be treated.i think later this year it should be available...with a very high success rate and very few side effects even people with advanced liver disease can be treated...although i don't know if late stage disease can be fully reversed..but at least it does stop any progression...hoping it will put an end to this deadly virus for good...i am geno type 4 but i think it does not matter what geno type you are...should be the end of hep c at last for everyone.

darren49 profile image
darren49

I've been lucky to get a liver transplant,but but still got hep-c. My doctors been saying they are going to treat my hep-c 18mths,and still,hope everyone gets treated asap.Get well soon people xx

in reply todarren49

My hubby also 😫😫 just had urgent admission to Kings and was told HCV attacking new liver but ???? Treatment - he was told they would start treatment ASAP but yesterday we had a letter saying that 'currently there isn't any treatments available for geno 3' ????? What have you been told ??? Hubby is 18 month post transplant and is almost exactly same as he was 'pre' - sleeping all the time 😩😩😩😩 at least he hasn't got HE (yet) 😘😘😘😘😘

bunny2be profile image
bunny2be

my hepc is now undetectable after 2 weeks of sofosbuvir and ribavirin,have also heard this can cure my cirrhosis how good is this,after 34 years and fibro 19.2

mick1970 profile image
mick1970

aye ave been on sofosbuvir (SOVALDI) N daklinsivur(DAKLINZA) 12week COURSE AV geno3 n COMPENSATED CIRRHOSIS av been on 8 weeks n went from OVER A MILLION N A HALF COPYS TAE a QUARTER AE ONE % AE THE VIRUS N 2 WKS not wan side effect nothing it used tae be geno type 1 hardest tae cure noo n NEW REPORTS THIS WEEK IT HAS BEEN REVERSED GENO 3 noo hardest so if a can go fae that tae that n 2 wks then theres hope for us all (ZERO SIDE AFFECTS FANTASTIC) AM DUE MA 4 WK bllood results end of week so all keep you posted a also no a lot ae good new meds oot n comin oot for aw the geno types so keep your spirits up theres newer n newer drugs gettn approved by FDA every week n THERES LOTS AE EXCITING TRIALS GON ON ALL OVER THE (WORLD) SO THE FUTURES LOOKIN GOOD JUST A PITTY BOOT(SOCIETY) N DISCRIMANATION ETC

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