March 2012

It is hard to think about antiretrovirals without worrying about side effects. Side effects are a major barrier to people who want to start HIV treatment. I have experienced my share of nasty side effects and never thought that I would actually see any side effect as a nice bonus.

I have been on some form of antiretroviral since 1988, except for maybe a year between 1995 – 1996. I started on monotherapy AZT and frankly just feel lucky that I lived to talk and write about it. I noticed AZT side effects from the first week I started taking it. I lost my appetite for food right away, even though I didn’t have the best appetite for food to begin with. At that point in my life I was referred to as someone quite skinny, I fluctuated between 50 – 55 kilos, just slightly under what my height demands. Some of my relatives were convinced I didn’t eat just so I would stay skinny. Why they thought that I have no idea, I had never really talked about my weight because it was never a worry for me. The only reason it came up for me is when people exclaimed that I was too small and needed to gain weight. It was when I go my HIV diagnosis that my weight I started to pay more attention to my weight.

While on AZT I started to lose weight, I believed it was a combination of stress and side effects. But my skin became darker and ashy and my toes and fingers nails turned black. But the choice for me was clear even with all the side effects, I had to continue to take AZT to be able to prolong my life. At the time, not taking AZT when it was available was for me meant choosing not to live.

What was absolutely bewildering was that a few times I actually got stopped on the street and was asked what I did to keep as slim as I did! The first time I just stammered and said I didn’t even think about my weight. But as this continued to happen, I had to com up with something to say. With a very straight face I would tell people that it was good African genes!

In the early 1990s I started on dual therapy and added DDI. I found DDI almost impossible to take because the tablets were so big and tasted really horrible. I always wanted to head for the bathroom to throw up every time I took it. But once again I made to choice to stick it out because It was what was available I believed it was helping.

In the mid-1990s when I left the US and went to Uganda, I run out of medication and there was nothing available in terms of medication at that time. I was continually losing weight (under 50 kilos at this point) and when I came down with TB, pneumonia and diarrhoea, I did not only scare other people I scared myself too. At one time while working in a duty free shop and serving a customer, the customer (Scandinavian) bent down and told me that I really did not need to try and lose anymore weight because I looked fine! This person may have thought I was bulimic! I just could not believe how different people were reacting to my loss of weight – it was not comforting to me at all!

When I started combination therapy in the late1900s, one of the antiretrovirals was D4T!I At this time I started to become more proactive in my treatment. After almost a year on combination therapy, with signs of lipoatrophy as well as lipodystrophy I was able to talk to my doctor to replace the D4T in my treatment.

It is an ongoing battle of making a choice of treatment that will not give you bad side effects for most people on treatment. After several combinations, I settled on Atripla which isn’t without its bad side effects but we know that people’s experiences are different on different treatments. Learning to mange the side effects as you do with other things in your life is key.

I continue to learn on how to best manage my life and accept some things that I do no have the power to change. I have experienced some horrendous things but learning more about treatments has helped. Through a combination of aging and side effects, no one with good eyesight will refer to me as small. I have filled up, my appetite has improved and (the best bit) I am no longer flat-chested! The journey continues…