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Neuropathy? On NNRTI Regimen
Sep 5, 2004

I was on Zerit, VIDEX and Sustiva (I think the Sustiva was in this regimen) for about 2 years and BOY did I get the Lipodystrophy (sp)! Cheeks sunken, legs and arms and chest skinny. After 2 yrs I was switched to Combivir and Sustiva which I've been on for about 2 years now. I have 2 issues: Will the Lipodystrophy go away at all (it has some, but not back to normal at all) and 2. I have horrible burning and pain in my calfs and especially my feet--OH THEY ACHE and HURT constantly, plus a bit of numbness and tingling in my left foot pinky toe. Is this "Neuropathy" and is it related to either my HIV or my meds? My viral load is zero and my CD4 counts great--not bad after 17 years! Thanks so much for this site! Bless you all!

Response from Dr. Young

Thanks for your question and nice comments.

It would appear (in retrospect) that you've had a couple of significant side effects from your first treatment regimen. It's clear now that d4T (Zerit)combined with ddI (Videx) causes an increased rate of peripheral neuropathy. Moreover, d4T causes an increased rate of lipoatrophy (aka lipodystrophy). Together, it made sense to switch you from d4T/ddI to Combivir (AZT/3TC).

There are a number of studies that demonstrate a slow improvement in lipoatrophy following switch from d4T to other medications (mostly studied in switches to abacavir (Ziagen), but probably also switches to tenofovir)-- the improvement can take a very long time, and it's not clear to me if full recovery happens in persons with severe fat thinning.

As for your calfs and feet-- this sounds like classic peripheral neuropathy, and is often the result of once having advanced HIV disease and (as mentioned above) drug effects. Treatment of this can be very difficult, requiring antiinflamatory medications (like ibuprofen) and narcotics. Other medications such as gabapentem (Neurontin) and tricyclic antidepressants also may help. A recent study from London also suggests that acetyl-L-carnitine taken twice daily should help too.

It does look like you're having a good immunological and virologic response to your current treatment. Let your doctor know about your symptoms-- discuss ways to minimize the impact that the neuropathy has on your quality of life.

Keep in touch, let us know how things turn out. BY

Bangkok Conference
lipo.. seeking help and not cure...yet!

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