I am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.

Friday, February 5, 2010

Ch...Ch...Ch...Changes

A few weeks ago, there was a post from TC who mentioned that they were just starting treatment, had had their first shot and no serious side effects yet. I hope it is still going well for TC and I wonder if they are seeing some changes.

I have noticed that the side effects and general overall feelings of health are very fluid during treatment. I have only been on the therapy for 8 weeks and yet I have had great variation in the range and severity of the effects of the meds on my body and mind.

At the beginning, I had a lot of emotional swings, lots of tears, ups and, more particularly, downs in my mental state and just not being able to predict moment to moment how I was going to feel. 8 weeks later and my emotional state is more stable. It is stable at a lower level, but stable. I am not moved to tears as easily. It still happens, it just takes better songs and movies to do it. I don’t get up and down as much and I am more likely to be able to keep an even keel in my dealings with others.

Why just today, while setting up a booth at the SF Antiquarian Book Fair, I was able to shoo away the aggressive and persistent dealers who insist on trying to root through your stock before you even set it up without blowing up at any of them or banning them from the booth. I would not have been able to have that level of equanimity a few weeks ago. Some of this is due, unfortunately, to having less energy and personal affect than before, but at least it allows for more predictable and reasonable behavior on my part.

For the first several weeks, I always had chest pain for 2 or 3 days after the Interferon injection. It feels, like someone said in one of the books my wife bought, like there has been a football stuffed into your chest. I do not get that much at all anymore and if I do, it is only for a few hours or so.

A couple of weeks into therapy I started to get mild rashes and itching, particularly at night. It was annoying and played hell with my sleep, which is the last thing you need with Hep C. I have not had rashes for 3 or 4 weeks now and the itching is now confined to a bout of intense itching, generally on the tops of my feet, every 10 nights or so. It is really intense and drives your crazy for a while, but I can handle it if it stays at 10-day intervals.

I also noticed that my eyes changed very rapidly during the first 4 weeks of treatment. I have natural monocular vision which means that one eye focuses on close things and the other on things far away. Even though I have glasses (bifocals even) and use them for reading at night and in the morning, I generally did not need them during the day for my normal activities. My left eye, the close focusing one, has lost a great deal of the ability to focus on small print. I now have to wear glasses for a lot of the reading I used to do without them, or suffer headaches from trying to focus. It happened fast enough that they sent me back to the eye doctor to see if anything even more serious was going on (cataracts, macular degeneration, etc). Thankfully, nothing except my losing the ability to read without glasses. It seems I am getting old, according to the cute young eye doctor. Since I am now much more stable and predictable in my emotional states, that momentary feeling of rage at the cute young eye doctor must have been an anomaly.

I also notice that in the past 2 to 3 weeks I get light-headed more easily than I did at the beginning of treatment. I have to be careful about getting up quickly and moving quickly as this triggers the feeling, sometimes quite acutely.

The other noticeable change since the beginning of treatment is in my general energy level and my level of muscle weakness. Both have been trending consistently down since the start. It has happened gradually enough that it took awhile for me to credit the treatment regimen for the effects. It was 4 or 5 weeks after the start that I really noticed the fact that doing something normal like the laundry left my arms tired, or that walking up a flight of stairs with a box of books left my legs burning. None of these sorts of activities bothered me at the beginning of treatment.

Again today, after spending 3 hours setting up the booth, I went home and immediately took a 3 hour nap. I was exhausted. This is an example of my lower general energy level. I cannot move as quickly. I have to do things more deliberately and slowly. I have to pace myself very precisely to make sure I will get the things I need done.

It is interesting that it affects writing these posts as well. One of the reasons I don’t do it everyday (given that sometimes I just don’t have a damn thing interesting or worthwhile to say) is that I get home from work and a bit of shopping and I am just wiped out. The idea of sitting and writing a post just seems like the most challenging thing I can imagine. And the bed, oh yes the bed, it so soft and warm and fluffy. With the nice sheets and my lovely wife and, well no need to wax rhapsodic about the desire to lie down and rest, we all know the joys of that. Speaking of which, the bed is calling to me now and it doesn’t sound like David Bowie either.

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