Dont try this at home!

Earlier this year I was experiencing problems with my drug regime. After taking combination therapy for nearly four years, I had reached what is now called “treatment fatigue”, a situation where I had become resentful of the drugs instead of grateful for the benefits they had brought me in terms of clinical disease.

As I was beginning to experience psychological problems as well as lipodostrophy, and I was sick of everyone telling me that I was clinically “well”, I did something rather drastic, though not until I had thought things through. For several months I had become convinced that my immune system was almost “normal” and that continuous intake of toxic drugs was actually making my “well being” worse. I became convinced that I didn’t need to keep taking my anti-HIV drugs, after all, my viral load had been undetectable for over two years, and my CD4 counts were quite respectable. Tired of the never ceasing side-effects of CRIXIVAN (Indinovir) I decided that I no longer was prepared to put up with the food restrictions, the headaches, nausea and sight difficulties that they inflicted upon me every eight hours of every day. So, after weeks of consideration, I awoke one Sunday morning and decided to stop taking them. All of them. Not just Indinovir, but D4T and 3TC as well. Everything. Even the Septrin.

I decided that I was due a “drug holiday”. A chance to be “normal” for a few months.

I also decided that I would restart treatment as soon as I started to become ill, rather than if my viral loads or CD4 counts started to change. I had decided that everyone had become obsessed with viral loads and CD4 counts and were ignoring the real issue of whether or not you FEEL well. So I stopped. It was bliss. Sheer bliss for about a week. Then, on the night I gave a talk at the Staffs Buddies Meeting about this very subject, I started to feel a little unwell, but I put it down to working all day and just being tired, and went home to bed. I awoke the next day and felt awful. I was bed-bound for about a week, with what can only be described as severe flu. During that time I read about other people who had stopped their treatments and had a second “sero-conversion”. I guessed that this was happening to me, but after about another week, the symptoms went and I got back to normal.Things were going great guns. My vision, thought processes and general well being were the best they had been for years. After about 2 ½ months, my regular check-up was due and I went for the usual CD4 and Viral load tests. This was to be the shock of my life. I had obviously expected there to be changes, but not this. My Viral load had gone from below detectable level to a reading that went off the top of the scale&ldots;.over 750,000. My CD4 count had fallen to 90.

Now, I may be self opinionated, often blunt and tactless and usually single minded, but I’m not stupid. Suddenly, for the first time in over two years, I thought about dying. And I didn’t want to. To cut a long (very long) story short, I decided immediately to return to HAART, and I underwent resistance tests to see which drugs I could take. This process took longer than expected and with a few weeks, all my old AIDS symptoms began to appear. Thrush, rashes, night sweats, mouth problems, the whole shooting match. Suddenly I had AIDS again. Scary. Very Scary.

Having decided to return to therapy, I began to investigate thoroughly all the available drugs and combinations I could take, and when my resistance tests came back showing that I had NOT become resistant to any of the drugs, it was time to go drug shopping. I asked around to friends, read like crazy and eventually decided that I would return to two of the three drugs (D4T and 3TC) as I had taken them for a long time and knew they gave me no side effects. I also decided never to take Indinovir again. So, after much consideration, I decided to take a NNRTI instead of a protease inhibitor (Nevirapine), for two reasons: 1) To avoid long term lypidystophy, 2) It is taken twice daily (the same as 3TC and D4T).I eventually started my new combination at the beginning of August. I had been drug-free for 4 months and my weight had fallen dramatically, as had my quality of life. I wondered how long it would take for the new combination to show any effect. That’s when surprise number two came along. By the beginning of September, I had regained all my lost weight, all my other symptoms had gone and I was “back to normal”. Both myself and my consultant were ..well... gobsmacked.

Once again I have been lucky. Very Lucky. And with the new regime it means that I only have to take drugs twice a day and without any food restrictions. I have absolutely no side effects at all, and my only problem now is remembering to take them. My advice after this whole episode: whilst I now have a better regime than before, and the actual outcome had been beneficial in my case, please, don’t try this at home! If your regime is becoming unbearable, talk to your consultant/clinicians and be truthful. Tell them how you feel. Honestly. And if they’re not listening and responding, talk to me. That’s what you elected me for, as your representative. There are ways of getting things changed, including your drug regime.

Bob Lishman