Getting started on treatments is never easy. And sometimes, as SAM PESCI found, it takes a concerted effort to fit treatments into your life.
After 20 or so years living with HIV I finally had to bite the bullet. It was time to make the big decision.
My counts weren’t as good as they had been and my doctor advised that they weren’t going to get any better. How long could I wait? As it turned out, not that long. A few more tests and it was clear I was indeed getting to a point that I really had to consider starting.
I had kept up with the latest in treatments for HIV so I knew all about the problems associated with them, however things have been getting better these days. The newer drug combinations consist of fewer pills and fewer immediate side effects. While the older protease inhibitors are implicated with long term side effects such as lipodystrophy, newer drugs are just as potent but seem to be less of a problem.
My doctor suggested that I start on Kaletra, a relatively new protease inhibitor, plus 3TC and tenofovir.
I said I would really rather not start with a protease — I just couldn’t bear the thought of having to deal with body changes. Not that I’m your muscled buffed Adonis — I do have a bit of a belly anyway and I’m a bit on the heavy side (brought up on way too much Italian food) but my shape is at least proportionate.
So I asked, how about efavirenz? I knew this non-nucleoside reverse transcriptase inhibitor (NNRTI) seemed not to increase blood lipids as much as the proteases, so there was hopefully less chance of lipodystrophy developing. He was OK with that.
I also felt pretty good actually being able to have that negotiating power with my doctor. I felt empowered.
The combination was pretty simple. Three pills, once a day, at night. No strict food or liquid restrictions either. Also there didn’t seem to be any side effects from the 3TC and tenofovir.
However my first few days were still difficult — I had trouble sleeping. Was my body simply getting used to the efavirenz? Unlike many of the other drugs, efavirenz affects the central nervous system. In one way it is an advantage: it crosses the blood-brain barrier and can therefore can reach the HIV that collects in pockets in the brain and elsewhere in the central nervous system.
The disadvantage is that it can leave you with a funny feeling — like being drunk and ‘speedy’ at the same time.
Anyway, some mornings were OK but others left me with the feeling of a hangover but without the fun night before it. This went on for about six months.
Then I remembered my GP telling me about how having a heavy and late meal just before taking my pills could accentuate these side effects. The idea was to have a light meal or at least have the meal and wait two or three hours for the food to digest properly before taking the pills.
“Shit!” I thought. “I can’t live my life from now on worrying about this.”
I thought it was bad enough having to get used to taking the pills every night in the first place. Now I had to take them in a certain way.
It was hard since all my life I’ve simply lived the way I wanted to. I can’t remember how many times I’ve left a bar or club late at night or early in the morning and stopped on the way home to pick up a pizza or souvlaki. But at the same time I was really getting tired of those ‘off’ mornings so I decided, OK, I’m going to make a concerted effort to do what I could.
So I started eating a lighter meal or at least eating earlier and waiting two or three hours before popping those pills just before going to sleep.
It has made a big difference. I’m feeling much better in the mornings; I feel the worst is over.
In the meantime my viral load has remained undetectable. My T-cell count has been rising too, but not as fast as the viral load dropping. My doctor said that while viral load can change dramatically, T-cell counts take just a little longer.
There are many combinations and, of course, everyone is at a different stage with HIV and may not have so many options. However it seems that for me, someone who had started treatments for the very first time or what the medicos call “treatment na??ve”, I could not have picked a better one — despite the time it took to get on top of the side effects.
Am I glad I’m on treatments? I could say that there is no use in thinking about it that way, since I didn’t have much of a choice, but I think I am. I look at it as a positive action that I have taken in my life in terms of gaining better health. I have more energy and, psychologically, I feel better knowing that my viral load is undetectable and my T-cell counts are slowly on the up.
My doctor believes that if I minimise the number of missed doses then this combination can last for years. That sounds pretty good to me.
Sam Pesci (not his real name) lives in Melbourne.
