Paul was diagnosed with hepatitis C as a teenager. After treatment with the new DAAs he has finally been cured. He talked with HFA about his treatment experiences.
Originally I was diagnosed with hep C when I was 15 and at that stage the doctors didn’t seem to think it was a big deal – it was just something that came along with having haemophilia. It didn’t really become an issue until I had elevated liver function test results.
Prior to the new DAAs I had two lots of the treatments that were available at the time – first, interferon and ribavirin and then PEGylated interferon and ribavirin. Both times I was on the treatment for about 6 months but was taken off because I didn’t have a response. The first treatment wasn’t so bad, but with the second treatment, there were mental side-effects with depression which was really difficult to deal with. Not good stuff – I ended up having counselling to manage it.
Even when I wasn’t on treatment, living with hep C meant I had symptoms like tiredness, and some days I would just feel terrible. It was like I had been run over by a bus – I had nothing left in the tank. There was also the residue of the treatments as well. After the first lot of treatment my memory wasn’t as good as it used to be.
Before the new treatments went on the PBS, I spent about two years waiting to have treatment through a compassionate access system, but to no avail.
Once it was announced that the new DAAs had been approved to go on the PBS, I had my name down with the hepatitis clinic a couple of months before they became available.
The workup for treatment was fairly straightforward. I had already had the PCR test to confirm that I had hep C and the test for my genotype. I had an appointment with the nurse at the hepatitis clinic to discuss the treatment and what was involved. Then I had to wait about a month for the treatment to become available. It was a really simple process and very convenient: the clinic sent my prescription to the hospital pharmacy and I rang to confirm the order and pick it up. The prescriptions were for 28 days so it was just a matter of calling the hospital pharmacy and making sure I collected the next prescription before the previous one ran out. The only other requirement was to have blood tests done at specified intervals to monitor how the treatment was progressing.
The new treatment was nothing like the interferon treatments. I had one Harvoni ® tablet a day every morning for 24 weeks. For the first two weeks I had some side-effects while my body got used to it: fatigue, a little bit of nausea. But after that there was nothing much; life just returned to normal. It didn’t affect my work. While I was on the treatment I also decided not to drink any alcohol. This was a personal choice just to give the treatment the best chance of doing what it had to do and not overloading my liver.
I think it is important to take advantage of the new treatments now that they are available. If anyone has had experience of the previous interferon treatments, these are completely different. As I mentioned earlier, I found the new treatment easy to tolerate and it didn’t impact on my ability to work.
Having had the new treatment and being cured has also had a big impact on my quality of life and improved the quality of my leisure and personal time. I have noticed over the last few months that I have a lot more energy. I used to go to work and then go home and feel really tired, now I get home and tinker about in the shed or whatever for a couple of hours if I feel like it.
If you have a bleeding disorder and hepatitis C I think it is important not to be afraid of the new treatments: go and get your liver health checked; talk to your doctor; talk to other people who have been through the new treatments.
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