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British Liver Trust
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Hello there everyone

Hi there my name is Ian and I have been hepatitis C positive for 25 years plus I am 55 years old and I am also co-infectted with HIV? I am looking forward to being a part of your forums. Thank you

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Hi there Ian!

And welcome! to our little band of merry travelers!

We're happy to have you!

I also had Hep C for over 20 years. I got the new Harvoni treatment last year and I've been all clear since then!

I have a question..does being co- infected bar you from getting the new Hep C drug? or from it working?

I'm just curious. Don't worry if you don't know. :)

So what brought you here? Was it the Hep C ? Are you showing any signs of liver disease?

I had hepatic cirrhosis and received a transplant last year, right after I finished my Hep C treatment. I was sick for about 3 and a half years or so prior to transplant.

Anyway, that's just a little about me!

Welcome!

Cheering you on!

kimberly

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Hi Kimberley

Firstly I am in the middle of the Harvoni treatment ,and no the hiv doesn't stop it from working the only thing is that I have to take the maximum dose of Ribavarin with the Harvoni as it seems to help in co-infected patients, but it can be a bit rough at times with side effects from the Ribavarin. And (touch wood) no I have no ill effects from my liver at present but it is cirrhosed , and lastly what brought me here is that i have a close friend who up to six weeks ago was fine but is now in a hospice with a month or two to live due to cancer of the liver due to cirrhosis because of the hep C. This has been a massive wake up call to me

Bye for now

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nods. I understand! It can come on so quick..it did for me also.. And right after I was diagnosed, I found out a friend of mine was suffering from the same thing, but was at the end. She was much younger than me, and had relapsed twice on drugs & booze while on the transplant list. so they took her off. Shortly after we spoke on the phone, she passed away. I was terrified, having been diagnosed with end stage, when a year before all was well.

Your lucky you have no issues but are getting the Harvoni.

I was prescribed the Riba also, but came off of it with in a few days. Yuck! Hate what that stuff does to the belly. The Harvoni is the most amazing stuff! I just cant believe it wiped my system clean! I'm so grateful I got the treatment.

One of my close friends, who is married to my children's godfather has a well known video blog in the US. He is a HIV activist there, and also a LGBT activist.

I've had other friends, in the past who got HIV in the early days, and are no longer with us.

I'm glad your feeling healthy and getting the treatment! Mostly people who are very sick with liver disease are getting the Harvoni in the UK, because it's so expensive. I would guess, unless you are out of pocket, you were bumped to top of list because of co- infection?

Anyhoo!

Welcome again!

Take Care!

xxx

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Hi Kimberly

Yes I know the maximum dose of the Ribavarin which is 1200mg ie 6 × 200mg tablets are knocking the stuffing out of me but I'll keep taking them if they help. And yes I know that I am fortunate to be getting the treatment but it seems to be the policy in Oxford to treat patients with chronic hep C before they get ill as it saves the cost of treating the illness, a sort of spend now and save later. Well that's what I've been told. Bye for now

Ian

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Hi Sykesy,

I've found a great deal of help on this forum. I'm being treated with Sofusbivar and Ribavirin at the moment. I too am taking the maximum dose of Ribavirin and I've also found that it has some unpleasant side effects.

I'm sorry to hear about your friend.

The treatment is very effective. Before I started treatment my viral load was just over eight million. When it was tested again at four weeks it had gone down to 57. So I'm soldiering on with the Ribavirin.

I'm sure you will find help, counsel and encouragement on this forum as I have.

Wishing you all the best.

Jack.

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Yeah Jack

Thanks for your message I am going to stick with the Ribavarin as well. I go for the four weeks test tomorrow, so fingers crossed for that. Have you been positive for long?, I have been for 25 years that I know about!!. I know that the Harvoni(sofosbuvir) has a good clearance rate so let's both keep our fingers crossed eh?, Chat again soon Jack

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I don't know when I became infected. I haven't been told how long I may have had the virus. I began to feel really ill almost exactly a year ago. I was experiencing a constant dull ache in my right upper quadrant of my abdomen. My doctor did a battery of tests and bbv screening. I was told I had HCV. About 3 months later I was told I had chronic HCV. I was also found to have what was described as a 'large calcified mass' in my gall bladder. I had my gall bladder removed a month or so ago.

I commenced treatment about ten months after diagnosis. From what I've learned on this forum, the swift reaction and beginning of treatment in my case is unusual.

I guess I'm lucky. I am extremely grateful for the treatment I am being given.

I'll be keeping my fingers crossed for your four weeks results. I'm confident that the results will be very good. These meds seem to be very effective.

Jack.

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Hi Jack

Thanks for your reply and it's good to see that you are getting the treatment as well as there appears to be a quite a lengthy waiting time in parts of the country and you got yours pretty quickly as did I, I know that it differs depending on where you happen to live. I am living in Oxford at present. What about you? And it's good that you got your gallbladder removed before It caused any problems. Chat again soon

Ian

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Hi Ian,

I lived in Headington with a nurse a couple of years ago. We lived in nurses quarters beside The Manor Hospital.

I'm living in Dumfrieshireat the moment. Oxford is a very beautiful part of the world. Some really great pubs and a lovely cocktail bar near the station if I remember correctly.

I really do consider myself lucky. I think I'd rather have had my gall bladder removed before treatment for HCV began, but I suppose there's something to be said for getting it all out of the way in one go.

Jack.

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I'm not up with Hep C or HIV but I know all about liver disease. Any questions then this is a great forum to get knowledgeable experienced answers.

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hi ian, sorry to hear about your friend and im hoping that the treatment works for you. i cleared the hep c virus about 10 years ago with ribavarin and interferon. i also had hep b 44 years ago and that seemed to clear itself. im glad you'v joined the forum there are many poeple with lots of experience here about looking after the liver and eating good food that the liver likes. as that is all important too. i dont have cirrhoses as yet but i have a grossly fibrotic liver and also i had a gallstone stuck in my bile duct which has caused 1/4 of my liver to atrophy. im still recovering from a 5 hour operation on my bile duct.it was 5 or weeks ago but they did lots of stitching and had to recontruct my bile duct. i wish you all the best. and i hope the time goes in well for you while your taking that ribavoron. i hope you clear the virus. many people who didnt get on with interferon are now clearing with the new one. so thats good news. all the very best. love grace.xoxoxo

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Hi Grace

Thanks for your reply and encouragement. I too have had hep B about 35 years ago but my system cleared the virus by itself. Sorry to hear about your operation on your bile duct (did they leave your gallbladder?) . I would like to know what foods are good for your liver and on the same note bad for your liver. I have a good friend who also managed to clear the hep C with Ribavarin and interferon and he said that It was terrible with side effects!!. How did you find it Grace?. Chat again soon

Ian

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