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Phil's treatment story

I was diagnosed with Hep C in 1991 but I think I picked it up in the mid-eighties. I have just recently finished my 3rd attempt of treatment.

The first time I had treatment was in 1996 - 3 injections of Alfa Interferon a week for six months. A week after my last jab the results came back and I was still carrying the virus. I was truly upset, six months down the pan, but two years later I was offered another go at it and I felt I had to give it a try.

This time it was combination therapy, the same interferon as before plus Ribavirin, this time for a year. I stopped drinking a few weeks before the start date. I was a heavy drinker and had drank everyday for at least 10 years, but I was determined to give this treatment the best chance to work. I found the strength to stay on the wagon. It was tough. The side effects were worrying.My hair is usually curly but after about three months it started thinning and growing straight. I felt unwell, had headaches, lost a stone and half in weight and had constant fluey symptoms, but I stuck to it. I live alone and don’t have anyone to lean on when I’m feeling ill. It sometimes felt like time was standing still - a day felt like a week. I tried to eat as healthily as I could, I drank lots of water, ate lots of fruit and veg and by the time I had completed the course I felt optimistic about the outcome. It was over - only if you have been through the treatment will you understand what a relief that is by itself.

I went to the hospital praying and with every finger and toe crossed for a good result but again the virus was still there. I sobbed like a baby and was depressed about the whole episode for some time, but life has to carry on doesn’t it?

So it was back to visiting the outpatients dept every six months, basically they were just keeping a check of my liver. Another six years passed and always in the back of my mind lurked the thought, “what’s going on… how much damage is this virus doing to me” because by now I’d had the virus at least twenty years. My bloods were ok and I was still not drinking. I felt alright some days and others I’d feel exhausted and some nights I would wake up covered in sweat. At the end of 2004 I had an appointment with the Consultant and he surprised me by saying “do you want another go at it”, he explained that there was a new stronger type of interferon (pegylated) and it had increased the success rate up to about 55% for genotype 1 and about 85% for genotype 2 and 3. I felt like saying thanks but no thanks at the thought of going through another year of feeling ill and everything else that goes with it, but I could not say no.

I met with the nurse – the one who had been through the treatment before with me and we worked out a start date of April 2005. I had four months to psyche myself up for a third attempt. The only thing that was worrying me was that I didn’t have anyone who I could lean on to help me when I was having a bad day and I knew there would be plenty of them, I just wish there were places for people like myself to go and convalesce. I guess it boils down to money and the cost of the treatment is already very expensive, but being looked after and eating healthy food and in an environment that is peaceful and restful I am sure would help more people to beat this virus.

Anyway I started to get myself fit again and was eating well and still drink free. I even allowed myself to get optimistic again as this time I knew what I was going to face for the next 48 weeks. When you’re well and doing day to day things time moves fast, but when you’re unwell time drags so slowly. The first night was what I expected, sweating, headache, flu-like symptoms… When I got up in the morning I felt overwhelmed with the thought of another year of purgatory. For the first week things didn’t feel so bad and I thought that maybe this new pegylated interferon was not as harsh as the interferon I had before. Every Tuesday would be jab day and afterwards I would go for a walk to my local common to get a bit of fresh air and exercise, I usually felt ok. One day I started to feel unwell there, I was sweating and my head was thumping.I sat there for about three hours trying to summon up the motivation and strength to get back home. I could only move at a snails pace but what a relief it was to get home. I took two Paracetamols and went to bed and I literally didn’t get up, except to go to the loo, for three to four days. I felt sick and all the ailments that I had previously been through on treatment were back.

After three months I was told my viral load had had a two log drop and I was chuffed to bits, thinking maybe this time I can beat this thing. I was feeling pretty optimistic. The weeks passed, some good and some not so good. By the time I was at the halfway point I found it hard to remember what it was like just to feel normal, normal for me at that point was feeling ill at a lesser degree. There was one day when a friend asked me if I could give him a hand moving a small sofa, he didn’t know I was on treatment so I agreed. Normally I am quite a strong bloke, but when we started to move this sofa I couldn’t believe how weak I had become, I nearly passed out lifting this thing up two flights of stairs.

Also around six months I developed really dry skin all over my body and around my ankles I got dermatitis, it would drive me insane with the itching which got worse at night time while I was asleep. I would scratch and scratch away because I was half asleep and in the morning the sheets were stained with blood. It drove me mad and even now four months after the end of the treatment the dermatitis has gone but it has left some scars. The last month was unbearable, it was like it was so close but still so far to the end.

Anyway I finished my third attempt at beating this virus in May 2006. As I got to the hospital I was so nervous my palms were sweating and my mouth was dry.The nurse called me into her office, she looked at me and came straight out with it, it had failed again. I just got up and walked home feeling numb. Altogether I have had two and an half years of interferon treatment and I cannot beat this damn virus. So now it is back to the old six monthly visit just to keep an eye on things and who knows something might come along someday that will do the trick.

Although it didn’t work for me, I hope I haven’t put anyone off from having this treatment. What I have written is just how it was for me. But everyone is different. I know people who have held down a job for the whole year while on treatment so it affects us all differently. Despite my experience my advice to anyone who’s thinking of doing the treatment is a big YES! You may not always see the light at the end of the tunnel during treatment but everyday the light gets closer and closer and you may find you are one of the lucky ones that come out of it cured.

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