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Johns Treatment diary

A patient named John has kindly offered to keep a diary of his experience whilst on treatment. This may be positive or negative or may vary on a day to day basis. 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 necesarily endorse the opinions held by one patient. However, we wish John all the best on his journey and feel the diary may be very helpful for others looking for an insight to the treatment journey.
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Week 14
2 November 2012
I have just had news from my Hep C nurse that at the end of week 12 I am still undetectable which I am chuffed about. So, finishing the Telapravir 11 days early didn't have any effect on the end result. That was the good news; the bad news was my HB level at last week’s blood test was only 8.9. So, I have to stay on the lower dosage of Ribavirin until the reading gets back above 10.
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Week 13
29 October 2012
Last Thursday I ended up at the local hospital A&E Dept. I had a really bad night Wednesday night with my face feeling absolutely on fire, it was burning hot. I kept having to put a cold flannel on it to try and cool it down. When I got up on Thursday morning my face seemed a little swollen particularly around my mouth and when I looked inside my mouth there were some red spots on my tongue.
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Week 12
29 October 2012
When I got home from my hospital visit last Monday tea time I noticed the rash appearing on my chest, I asked my wife to look at my back and she confirmed it was there as well.
On the Tuesday I e-mailed some photos to my Hep C nurse who suggested I visit my GP and arrange to get some creams to try and treat it. By the time I got to see my GP on Wednesday the rash had spread considerably over my body, in fact my GP was quite shocked at the extent and severity of it. She gave me the creams but said if it continued to get worse I should stop taking the Telapravir. Obviously I didn’t want to do that, I wanted to try and take it for as long as I could to give myself the best chance of a cure.
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Week 11
20 October 2012
When the rash came it was very quickly and extensively. From a few spots one day it was over quite a lot of my body the next. I have e-mailed some photos to the nurse and she has arranged for my GP to prescribe two lots of cream which are Hydromol dry skin cream and Betnovate topical corticosteroid cream. I have started to use them last night and they do seem to be helping a little bit.
The nurse has asked me to go back next Tuesday for them to have a look at it and the way it is spreading I strongly suspect they will immediately stop the Telapravir. If so, by that point I will have completed 11 weeks so, although not as good as 12 weeks, at least I don’t think it will be too bad. Better having to stop at 11 weeks that say 4 or 5 is the way I am looking at it.
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Week 10
8 October 2012
I got the phone call from the nurse at the hospital and she confirmed my viral load is now undetectable. This was obviously very good news but there was no real celebrations, quite simply I felt far too ill for celebrating. Physically and mentally I am not in a good place at the moment, I am really struggling with my energy levels and everything is far too much trouble. Mentally I just cannot be bothered with anything. Things that normally would bother me or I would normally get involved with are just passing me by. My work is suffering and that is something I need to be very careful of. Losing my job is not an option, not the way things are at the moment on the jobs front and on the other hand stopping the treatment is also not an option. So, I find myself between a rock and a hard place struggling to cope with both.
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Week 9
3 October 2012
The last week has not been a good one in terms of side effects. I have had a bit of nausea creep back into my day, not as much as when I first started the treatment but never the less it was an unwelcome return. I have also felt quiet and withdrawn. I have certainly been less talkative and I have wanted to keep myself more to myself. I have also been less interested in things that are going on around me. I read Penny’s blog about when she sadly left her handbag on the ferry but she said she wasn’t bothered. I fully understood what she meant when she said that. Things that would normally bother you don’t seem to bother you anywhere near as much.
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Week 8
1 October 2012
I am sorry if this week’s blog is going to sound on the negative side but I think it is right to say it as I experience it.
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Week 7
18 September 2012
I didn’t feel quite as bad over the last week. Still feeling tired and lack of energy but I detected a little improvement in the situation. So much so I decided to drive to the hospital for my next visit. It actually worked our much better and didn’t seem so much of an ordeal.
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Week 6
17 September 2012
The wait for the blood test results from the Monday to getting the phone call from the nurse on Friday afternoon was the longest 5 days of my life. Each day seemed to drag by and no matter how much I tried to take my mind off things it was never far from my thoughts. I had decided in my own mind the treatment had failed and thought it best to think along those lines. At least then I would be prepared if the news turned out to be bad and it would help to soften the blow.
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Week 5
4 September 2012
I went back to the hospital yesterday and it turned out to be a very hard day. I was feeling very tired as it was and didn’t really feel up to the long journey.
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