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The man and his feet
Life with neuropathy, by Michael Carter
I’m a HAART success story. I’ve never had to change treatment because my viral load rebounded. Soon after starting my first combination in the spring of 1998 my viral load fell to undetectable and has stayed there, and my CD4 cell count has steadily increased from a couple of hundred to such a high level where a fluctuation of 200 cells or so no longer causes me the slightest concern. Indeed, at a recent consultation my doctor told me that if he looked at my overall immune profile, he’d never guess I was HIV-positive.
Okay, enough of the boasting. There’s another story to tell, and one that makes it all too clear that successful HAART involves more than a good set of lab results.
HAART, and in particular, the inclusion of d4T in my initial treatment combination, has left me with a slight limp. I hobble around my flat when not wearing shoes, and no matter how thick my socks, or how sturdy my boots, the recent cold spell left me with feet that were alternatively numb and then on fire. Even though I stopped taking the drug three-and-a-half years ago, I still live with neuropathy.
It was explained to me when I was prescribed my first combination of nelfinavir, 3TC, and d4T, that d4T could cause neuropathy. The literature likened it to pins and needles. That didn't sound too bad, and anyway, I was confident I wouldn’t be affected by it anyway.
How wrong I was. Within a fortnight, I experienced a burning pain on the top of both feet. None of the over-the-counter painkillers at my disposal made the slightest difference, and the symptoms rapidly worsened, and within a month, the only relief I could get from the pain was to retire to bed at 8pm most evenings.
My doctor was sympathetic and helpful. He confirmed my suspicions that I had neuropathy and provided me with a supplement called acetyl-l-carnitine, which was being studied to see if it helped protect against the side-effect. No such luck; in my casethe symptoms worsened, and anyway, supplies of the supplement temporarily ran out.
A change of treatment was suggested, which I was initially reluctant to consider – my viral load was undetectable, and my CD4 cell count was already in excess of pre-diagnosis levels! Anyway, the alternatives – AZT, which I still associated with its bad press from the monotherapy days, or abacavir with its rash of deaths during clinical trials – didn’t seem too attractive. But the pain made me reconsider. I dropped d4T and started taking abacavir without any new problems. My neuropathy stopped getting worse, even though it was still so bad that I had to be referred to a pain control clinic.
Over the past few years it’s gradually improved, but even as I sit writing this at home on a unseasonably chilly late April morning, wearing thick socks, the burning pain in my feet constantly reminds me that the side-effects of HAART need taking as seriously as lab results.
I’m a HAART success story. I’ve never had to change treatment because my viral load rebounded. Soon after starting my first combination in the spring of 1998 my viral load fell to undetectable and has stayed there, and my CD4 cell count has steadily increased from a couple of hundred to such a high level where a fluctuation of 200 cells or so no longer causes me the slightest concern. Indeed, at a recent consultation my doctor told me that if he looked at my overall immune profile, he’d never guess I was HIV-positive.
Okay, enough of the boasting. There’s another story to tell, and one that makes it all too clear that successful HAART involves more than a good set of lab results.
HAART, and in particular, the inclusion of d4T in my initial treatment combination, has left me with a slight limp. I hobble around my flat when not wearing shoes, and no matter how thick my socks, or how sturdy my boots, the recent cold spell left me with feet that were alternatively numb and then on fire. Even though I stopped taking the drug three-and-a-half years ago, I still live with neuropathy.
It was explained to me when I was prescribed my first combination of nelfinavir, 3TC, and d4T, that d4T could cause neuropathy. The literature likened it to pins and needles. That didn't sound too bad, and anyway, I was confident I wouldn’t be affected by it anyway.
How wrong I was. Within a fortnight, I experienced a burning pain on the top of both feet. None of the over-the-counter painkillers at my disposal made the slightest difference, and the symptoms rapidly worsened, and within a month, the only relief I could get from the pain was to retire to bed at 8pm most evenings.
My doctor was sympathetic and helpful. He confirmed my suspicions that I had neuropathy and provided me with a supplement called acetyl-l-carnitine, which was being studied to see if it helped protect against the side-effect. No such luck; in my casethe symptoms worsened, and anyway, supplies of the supplement temporarily ran out.
A change of treatment was suggested, which I was initially reluctant to consider – my viral load was undetectable, and my CD4 cell count was already in excess of pre-diagnosis levels! Anyway, the alternatives – AZT, which I still associated with its bad press from the monotherapy days, or abacavir with its rash of deaths during clinical trials – didn’t seem too attractive. But the pain made me reconsider. I dropped d4T and started taking abacavir without any new problems. My neuropathy stopped getting worse, even though it was still so bad that I had to be referred to a pain control clinic.
Over the past few years it’s gradually improved, but even as I sit writing this at home on a unseasonably chilly late April morning, wearing thick socks, the burning pain in my feet constantly reminds me that the side-effects of HAART need taking as seriously as lab results.