The drug AZT (azidothymidine) had been around since the sixties, when it was deemed too toxic to use to treat cancer, but it did appear to show some activity against HIV. Its efficacy was a mystery, debatable at the very least, but it did give us the feeling that there was something we could take to fight back.
It’s 1989 and CD4 counts are finally around, except we’re not terribly sure of what they mean other that more is better. I remember that at the time 800 – 1100 was considered the “normal” range. Consequently I’m not a little shaken when my first CD4 count is 389. In retrospect, there was no baseline measurement to work from so we had no idea whether this was low or reasonable.
Any physiological measurement has a bell curve when you graph a large population’s results and “normal” is usually considered to what’s in the centre X% of the bell curve. Once you’ve had a series of the same physiological test it’s easier to establish what’s normal for you. As an example, I tend to have low platelet numbers: it’s “normal for me”, which is a much better starting point to work from if you can.
The drug AZT (azidothymidine) had been around since the sixties, when it was deemed too toxic to use to treat cancer, but it did appear to show some activity against HIV. Its efficacy was a mystery, debatable at the very least, but it did give us the feeling that there was something we could take to fight back. The first doses were huge: 500mg every four hours. That’s EVERY four hours. Some people couldn’t keep up with the dosing schedule, some people felt sufficiently unwell to drop out, some became anaemic and required blood transfusions, and some died.
I was slipped into the Concorde study as a late entrant: we got the real thing, but the point of the study was too see if a lower dose had any beneficial effect and while, hopefully, lowering the adverse effects. The dose was a comparatively tiny 100mg four times a day. In actual fact, it appeared to do damn all to help, but it gave me, and I presume others, the feeling that we were doing something positive to help ourselves, despite the crushing headaches and vomiting.
The useful aspect of AZT was that it crosses the blood/brain barrier which HIV does with ease, but is less than usual with other drugs. A little ray of hope, then for people with aids-related dementia, but in general, for most of us who could tolerate the stuff, we saw our CD4 counts slide downwards.
The depressing end to the story was the failure of the Concorde trial in 1993, when it was decided that low dose AZT had no advantage therapeutically over the much larger dose, just fewer side effects.
Sometime around 1990 we had ddI (didnosine), a powder which had to be mixed with apple juice twice a day. The end result was disgusting and lent itself to even more powerful headaches than AZT offered. Several people died of pancreatitis caused by ddI. I lasted a week on it. It’s still available, of course, now in time release capsules, but they haven’t got rid its propensity to cause pancreatitis. The third member of the trinity was ddC (zalcitabine) , a tiny little thing about the size of a small viagra. That didn’t do much of anything, as I remember, but it was easy to take!
In the late mid-nineties the final phase of testing nevirapine came along. I jumped at it because it was the only way of getting 3TC, which as yet was not on general release. It was a double blind trial and as I was getting sicker I felt the more antivirals I could be on the better, so my prescription had grown to AZT, 3TC (Lamivudine) and nevirapine: I was taking at least two antivirals, possibly three, being monitored much more regularly than at my usual clinic and I had to pass a Waterstones, where I allowed myself £20 to spend on books, on the way to the Kobler Centre.
I was getting weaker, with more low level infections as my CD4 continued to fall. One of the worst was a dermatitis that caused itching all over my body, and where I itched, I scratched. I tried surgical gloves and bike gloves at night. Nothing worked. Then you looked at my tattoos carefully you could see that the line of the outline gun was raised – Braille tattoos! I was duly photographed for the records “Stop posing” – “I’m sorry: I’m not used to being photographed with my clothes on”; and even a biopsy came back with the news that I had dermatitis of unknown origin… Somewhere there’s a piece of me frozen away for later examination.
Half way through the two year nevirapine trial the protocols were re-written as the first protease inhibitors had come on the market and were showing such promise that it was felt unethical to deny them to those of us on the nevirapine trial. So I get seemingly endless bottles of ritonavir that had to be kept in the fridge (four capsules morning and night) with a huge bottle of saqunivir. Triple, perhaps even quadruple therapy…
It turned out to be triple therapy: the nevirapine I’d religiously been taking for two years was the chalk pill. Then, you always tried to keep a class of drugs to one side “for a rainy day”. In 1999 my partner and I fell in love with a rottweiler whom we were babysitting for a friend – before they returned we’d adopted a three year old rottweiler called Zeus who became the first of my special boys.
A year later, although I’d made it through the Great Ritonavir Shortage, taking the liquid version which was totally foul – imagine tasting copper every waking moment of the day! I was doing much better than the other guys at the clinic with my CD4 count a dizzying 235 (up from 80). What was I doing differently? The only thing we could think of was that I had my Zeus…
Looking back I attribute a number of health problems to these early drugs. It’s important to remember that they were often prescribed in massive overdoses and that today we know a hell of a lot more about the drugs. If you’re about to start treatment, please, I beg you, don’t be put off by this article: it’s history. Past. Gone. True, some people can’t tolerate a few of today’s drugs, but there are so many available that it’s extremely rare that a suitable combination can’t be found.
Don’t think that starting meds means you suddenly going to be ill with a load of side effects: they’re not compulsory. Of my current combination the only side effect I had was a coppery taste at the back of my mouth for a few hours each morning after taking the ritonavir (this time at its proper dose of 100mg per day instead of 800mg!). The only problem that caused me was that the dog over the road didn’t like or trust the smell of my medicine breath.
If you have questions about your drugs, ask your consultant or register with www.myhiv.org.uk and ask there. And don’t worry!