I am starting treatment for hep c on 24 th May and advise welcome please

[Lelly321]

[sjveitch12]

Hi how you doing?? I contracted genotype 3 hep last year and started the treatment in febuary. Im half way through now and its not been easy.it has made me anaemic because the ribavarin destroys the red blood cells. Basically it is very draining mentally and physically so prepare yourself.i dont want to live with it so ive taking the chance.But bear in mind there are no guarantees of being cured.my hepatoligist told me that theyve being testing a pill you take for 12 weeks with little side effects and it has 100 effective.dont know when this will be availible but it sounds great.you take care and good luck.

[Lelly321 in reply to sjveitch12]

thank you so much for answering and good luck with your treatment i am geno type 2 i was diagnosed in 1999 and its taken this long to get treatment !! keep in touch xx

[jennyjolly in reply to sjveitch12]

They said that about Harvoni

Big Pharma has been known to exaggerate safety of their meds

However..would you mind posting if/when you hear of this new treatment please?

Wish you a full cure/recovery

[cookiecrumbles]

Good luck with your treatment. It does seem a very long time to wait for treatment but at least its starting now. I'm a genotype 3 hep c and due to start treatment in September so trying to gather lots of information. But at the same time keeping it measured as there is an awful lot of nonsense and scaremongering on the web. Bolly recommended the hepcnomads site which has lots of good information as well as this one!

[Ph1ldad]

Hi there. I was one of the first to trial hep c treatment using interferon and an antiviral drug back in 1996. If you're on the same treatment, watch the side effects of the interferon; I didn't realise how moody and critical I'd become. Nearly lost friends but they stuck with me. Pretend you've got 12 months of 'flu and take plenty of rest and fluids and eat a good diet is the best I can offer and good luck

[Tatjana in reply to Ph1ldad]

Hi Phdad I think I was on the same drug trial as you maybe in 1996. Mine was in a private hospital in Harrow! Anyway I echo what you say. I was on Interferon and Ribavirin (not the placebo) and I was near suicidal with the side effects. Then after three months I was phoned up and told 'stop taking the tablets' and injections because they were not working. I have geno type 1A which is so much harder to cure - 3 has a much higher success rate. Good luck Sjveitch. I had no support forum at that time and you need that support.

[sjveitch12]

Hi everyone theres good information on here.Ive been doing my head in on the internet!!! Try to keep off it!! For the people starting there treatment I wish you good luck and success.try tohave a support network because this has been my biggest mmistake.Ive locked myself away and its made it tough.its not an easy time but you can do it

[Dan68 in reply to sjveitch12]

Hi I started triple therapy for hep c in April 2012, I was geno type 1A and found the first 3months of treatment very hard and I was trying to hold down my job at the same time. The problem is the tablets you have to take in the first 3 months which you also have to take 25ml of fat to break them down, I was taking neat olive oil with them as it was easier to hold down than other foods especially in the morning.

My feet ,calfs,ankles and belly all swelled up with rashes,I couldn't even get my feet in my shoes, sickness was terrible at the time and everyone commented on how I'll I looked. After a couple of months I was referred to the liver unit at QEH Birmingham and after 7 months of treatment they stopped it as it was causing me more harm than good, although my viral load had gone from 1.5 million to undetected above 12 then every blood test after showed no trace detected! Problem was the hep had caused cirrhosis which then caused cancer in 3 tumours on my liver, I was put on the transplant list and in April this year I had a transplant,I'm seven weeks post op now and early signs are good. I had all the symptoms everyone mentions,itching that caused me to scratch till I bled , jaundice et. Just remember cirrhosis leads to cancer in a high percentage of cases so ensure you have regular scans and MRIs.

I've gave blood and tissue to Birminghams liver research centre and they use my case in seminars to educate in training.

Good luck

[Bolly]

Tatjana - sorry to hi-jack Lelly's thread, but have you asked your treatment team about the new triple treatment with protease inhibiters for Geno 1s. Its no walk in the park, but its a second chance for Geno 1s who failed to respond or relapsed to the basic SOC standard treatment with 2 drugs.

[Tatjana in reply to Bolly]

No Bolly, I have not heard about it and am interested to hear from you but maybe my age is not ok. I applied to a notice on a board at my hospital for applicants for a 'Drugs Trial' gave all my details but think either maybe my age is against me or my Lymphoma is against me?? before I left UK for holiday and spoke to a doctor and he took my details but I have not been at home to receive any mail. Thanks for the info.

[Bolly]

Tatjana the new protease inhibiters were licensed for use in the UK in 2012 - around June I think. They are an 'add on' drug. The most frequently prescribed seems to be Telaprevir (Incivo), though there is another PI called Boceprevir (Victrelis). Its for hard to treat Geno 1s (doesnt work for Geno 2 or 3)

Protease inhibitors (PI) belong to a group of medicines called Direct Acting Antivirals (DAAs). Telaprevir is taken for the first 12 weeks of treatment along with interferon and ribavirin and after that the patient continues with inf and riba alone.

Telaprevir has a licence to be used for genotype 1 chronic hepatitis C virus unless you have decompensated liver disease (advanced cirrhosis).

The NHS are, I think, mainly targeting those who have previously been treated with interferon alfa (pegylated or non pegylated) alone or in combination with ribavirin, including relapsers, partial responders and null responders.

Which sounds like you?

I would be getting in touch with my doctor or specialist nurse from previous treatment to find out if Telaprevir is an option for you. I don't think age is a factor, its more the health of your liver and what happened in your previous treatment to cause you to be taken off.

The virus doesn't stand still, and without treatment your liver will most likely get worse. But yes there may be a problem if you have lymphoma, as its a harsh treatment at the best of times and would mess with your white blood cells etc.

There is an entire section on Hep C Nomads at hepcnomads.co.uk devoted to people on the PI treatment.

[Tatjana in reply to Bolly]

Bolly my last time on the internet, you have been so helpful. I am just returning to the UK today and will respond shortly. By the way you were correct in your assumptions and also you remember my EMJL. It was Interferon and Ribervirin years ago on Drugs Trial. My liver has no cirrhosis only fibrosis (that has been recently confirmed about liver biopsy) you are giving me hope though. Speak soon. Best wishes

[Tatjana in reply to Bolly]

Hi Bolly I don't know if I mentioned that I applied to a notice board at my Liver Hospital to go on a Drugs Trial a couple of days before I went on holiday. Spoke on the phone to the doctor running the trial. He was very polite etc. When I arrived home I opened a letter which briefly but politely refused me to go on the trial, why, as you mention, my Lymphoma so that is that.

Thanks for all your support and advice.