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Sophie's Treatment Diary

Sophie is the mother of Matthew aged 18 who is undergoing treatment for the second time. He is doing the Abbot M11 652 trial. Matthew caught hepatitis C from Sophie vertically (at birth). Sophie too has undergone a year of pegylated interferon, which didn’t work. Sophie will write about the effects of this trial on both her and Matthew.

It is important to remember that many patients have quite different experiences with treatment. The Hepatitis C Trust aims only to offer impartial information and does not necessarily endorse the opinions held by these blogs. However, we wish Max and Elizabeth all the best and thank them kindly for sharing their experience with us.

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6 month SVR
16 October 2012
Matthew got his 6 month SVR yesterday. The last 6 months have been miraculous. Matthew has gone from lying around in bed most of the week and having trouble walking very far to running, playing basket ball, cycling and leading an active and full life.
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Only 2 weeks left to go
11 April 2012
Unbelievably Matthew has only got a couple of weeks left on his treatment. I've been a bit negligent in keeping this blog up because there's been nothing really to say. He doesn't have any side effects, in fact he feels better than he's ever felt. Since the virus has gone he's not tired all the time.
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Undetectable
20 March 2012
Matthew got his results emailed to him yesterday and finally his virus is undetectable. He needed this piece of news, even though he'd reached the 6 week marker that would let him complete treatment he needed the boost of going clear. He was starting to get very depressed and spending more and more time on his own.
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A little midweek update
6 March 2012
I spoke to one of Matthews nurses yesterday as I was a bit concerned that his viral load at plateaued. We’d actually had nothing to worry about. For the trial that he’s doing he has to be under 25 at 6 weeks which he has achieved already.
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Week 4 to 5
5 March 2012
The last couple of blood tests have shown that Matthew's viral load has continued to go in the right direction. Because of all the stories of people going undetectable after 3 or 4 weeks we’ve been waiting for the dame to happen to Matthew.
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Week 3
20 February 2012
Matthew’s viral load was down to 253 at his last appointment. That was in his first 2 weeks of treatment.
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Great News
7 February 2012
Just back from the hospital. Matthew's viral load dropped from 13million to 1710 in 3 days. He did 7 months of standard treatment before and got no drop at all.
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Week 1
6 February 2012
I meant to come back to this much sooner. Our start date was put back again though only by a day this time, and the 1st day was so exhausting I’ve been catching up all week.
The meds had to couriered over from the States and then checked by 3 or 4 independent people. They got held up and then the pharmacy, which usually has 7 people was down to 2. Once Matthew had taken his first lot of drugs we had to stay there for another 4 hours to have bloods at 2 hours and then bloods at 4.
We met a man there who had started the week before and his viral load had dropped from 8 million to around 8500 in the first 4 hours after taking the drugs. Even though the day seemed endless this news was so exciting that I think we could have put have put up with having to wait there the through night.
After Matthew's 1st lot of drugs we went for something to eat and marvelled at the thought of the drugs doing their work as he were sitting there eating.
Our nurse showed us a graph of compliance. That is people who take their drugs at the same time every day and the results. The bottles are electronically tagged so that the drugs company can spy on when you take them. People who took all drugs at the same time every day are having miraculous responses. People who take them at different hours every day can become resistant and not doing as well.
Matthew is starting this treatment at a baseline of being very unwell. He’s constantly tired and hasn’t been able to participate in life like a normal teenager since he did his first round of treatment when he was 12. I say this because it’s very difficult at this point to tell what is the treatment and what it not.
The first couple of days he ran on adrenaline. He was excited and seemed to imagine he felt better than he had in years. By the third day though he was exhausted and barely able to get out of bed. This is how he usually is though. He says he can’t feel side effects i.e. nausea, headaches, dry skin but he feels very tired and achy.
The complication for me is that I have also have hep C and also feel exhausted all the time, plus I hold down a full time job, so right now as I write the whole thing feels a bit overwhelming. I know I need to go out and get some decent food today and I don’t want to leave my sofa and face the snow.
Next Tuesday we get his 1st lot of results. Keep your fingers crossed for us.
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A Bit About Us
26 January 2012
My son Matthew is just about to start a trial without the use of interferon.
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