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Extreme Leg Pain for me too
Feb 22, 2008

I'm HIV positive and have been on Nevirapine, Epivir and Tenofovir for the past 3 years. For the past 3 months, I have had extreme, crippling leg pain. I have seen a neurologist who says the pain I describe is not typical for HIV related neuropathy. Like so many people on, my doctors seem dismissive of my leg pain, but it has become so extreme that it is compromising the quality of my life. The pain is a powerful, crushing ache that gets worse and worse. At first, I only had it at night, but now the pain has crept into the daytime too. I find myself massaging my legs and constantly wincing at work. I have a hard time sleeping at night because the leg pain is so extreme. I read the all the time and more and more I see HIV positive people on anti-retroviral treatment complaining of extreme leg pain. Recently, I suspected it might be the Epivir, so last week, my HIV specialist switched me to Truvada with the Nevirapine, but after a week, the leg pain is just as awful. I have been to the HIV specialist for the leg pain, to a neurologist who specializes in HIV. I have had an MRI and have another one scheduled, and I would think this pain was something other than HIV if I didn't see so many other anecdotal stories about leg pain here. Is it possible that there is some issue with leg pain and HIV that doctors have yet to codify? I'm at my wits end. I have never experienced pain before. I am asymptiomatic, healthy and have Tcells in the 500-600 range. My health was great until the last few months, but now, I'm feeling so helpless due to the pain. Any ideas?

Response from Dr. Henry

If you were having peripheral neuropathy from lamivudine (Epivir), switching to another dual NRTI combination with FTC may not result in any benefit. If your HIV drugs are involved then a switch off the NRTI class altogether might be worth a trial (such as dual boosted PI regimen or boosted PI + raltegravir). Have you had nerve conduction or EMG tests to better define the nature and locality of any nerve damage? For some patients , L acetyl carnitine sometimes seems to help. Most patients I see with neuropathy get some level of effective pain relieve with aggressive use of analgesics/narcotics. That being said, I have a handful of patients whose peripheral neuropathy has not been well explained or managed though some degree of pain relief is obtained with a range of interventions. I often get a pain clinic consult for help in the pain relief department. KH

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