Starting Treatment: it's NOT horrifying.
Oct 9, 2004
In April 2004 I came down with a serious case of shingles all over my neck, head, and side of my face. I had been HIV+ for four years. My CD4 count before the shingles had been 258. I had been terrified of the horrors of starting treatment and was waiting for the "order to start" from my clinic. The shingles were horrible and the condition really shook me. Consequently, I posted a message on this noticeboard and Gerald Pierone urged me to start treatment without delay. So I then had another blood test: my CD4 count had dropped to 137! No wonder I had developed shingles. No wonder it took double-dosages of drugs and four weeks to shift the condition. I reluctantly realised that at last I HAD to start treatment.
I'm 50. I had lived through the terrible years when being positive generally meant a horrible death. I had seen all the horrifying films and documentaries, and lost twenty-five friends or acquaintances. I was really scared. Would the drugs save me from death? Would the side-effects be as horrendous as the first experimental drugs of the late 80's and early 90's?
Well, I started treatment in June 2004. I am on Efavirenz, Lamivudine, and Tenofovir. I take all these together once a day, at 10.30pm each night. I have a special watch that vibrates silently to remind me to take them, without delay. One month after beginning treatment my viral load was undetectable and my CD4 count had DOUBLTED. Right now, four months after starting treatment, my CD4 count is up to 495, and the viral load remains undetectable. (Remember that six months after I sero-converted, four years ago, my CD4 count had dropped to 318 and that it never stopped dropping until it reached 137 in May 2004 when I started treatment.)
So, I am SO pleased. Thank-you, Dr. Pierone, for urging me and encouraging me to begin treatment.
As for the side-effects I dreaded, well, the efavirenz still disturbs my sleep in that it promotes vivid dreaming, sometimes vivid nice dreams, sometimes vivid nightmares, so I now sleep quite lightly through the night. My partner's movements and occasional snores now wake me up - maybe three to five times a night, but I usually do get back to sleep within twenty minutes or so. I need to sleep longer each night as a result of all this.
In the first two months I had a number of nights when I could not sleep AT ALL. This made me crotchety, aggressive, and depressed the next day. But this all-night sleeplessness has stopped since I discovered that a fatty meal in the evenings (about 7.30pm each night) can increase Efavirenz in the blood to a level 60% in excess of the normal level - causing greater dreaming and greater insomnia. So, roast chicken, roast potatoes, fried foods, and suchlike, are no longer part of my evening meals, and, as a result, I don't have any more sleepless nights - only the vivid dreams, which I sort of enjoy, although they deprive me of really deep sleep!
The other big positive, besides having an undetectable viral load and a CD4 count of 495, is that my red face and flaky facial skin have gone! My facial pallour has returned to a smooth pale normal. It had been an embarrassment for the two years before treatment began. Friends who hadn't seen me for a while noticed it the most and would often say something like, "Hey, you're all RED!". I could tell that some people thought that I must have been on the bottle, developing alcoholic problems! They made subtle comments about how too much alcohol gives people a red face.
I hope that all of the above will encourage anybody else who is as fearful as I was about starting treatment. These new drugs really DO work, and the side-effects that I have experienced, and continue to experience, are a price well worth paying for each extra day of life.
Best Wishes, from the UK.
Response from Dr. Pierone
Hello, thanks for posting with your follow up results. We sometimes focus on potential side effects of treatment on this and other forums and may not highlight the fact that many people on therapy do extremely well. There is no question that the medications are getting better and so is our understanding of this disease. Glad to hear that things are going well and you have my continued good wishes.
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