Jun 29, 2008
I was diagnosed in Nov. 2007 with PCP. My CD4 count was about 20. My doctor put me on Truvada and Isentress. At the first checkup, CD4 count was up to almost 200. I've been having serious neuropathy in my feet and triceps, and to some degree all throughout my body. My feet and arms burn, sting, tingle, numbness and pain. I often have a burning sensation throughout my body as well as a mild stinging. I have a rash on my forehead that looks like a sunburn. Prior to the diagnosis, I had a cyst which was causing sciatica, and I had some PN in my right foot as a result. The cyst was removed 3 years ago. It's not clear to me whether the PN is caused or aggravated by the meds. This med regimen is not known to cause PN, but there is some evidence that tenofivir can do this. I have been to a neurologist also, and we've tried Neurontin and Cymbalta. The neurontin helped the stinging, but made everything else much much worse and made me so fatigued I couldn't function. The Cymbalta was liking drinking 10 gallons of coffee and having the flu. I got off the neurontin and things improved, but I still am bothered by the all-body burning and tingling and the feet/arms issues. The only way to know if the meds are part of the problem is to change the meds. That scares me a lot. This regimen is keeping the virus under control and changing it makes me very anxious. Do you think it's worth trying? There is only scant evidence that tenofivir cause PN, but there is a possibility. How likely is it that a different med would help? I had some PN in my right foot prior to taking meds, but since starting on the meds it has gotten much worse. Thanks
Response from Dr. Henry
You make a good case for a therapeutic substitution trial using alternative HIV drugs. Perhaps a boosted protease inhibitor could be substituted for the Truvada if you are fully suppressed(ie continue the Isentress and possibly adding abacavir if your are HLBV B5701 negative). FTC in the Truvada also rarely aggravates peripheral neuropathy so a trial off the Truvada might be warranted for several months. KH
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