|started first-line regimen 14 weeks ago, numbers not as good as they should be, I think
Sep 20, 2004
I tested positive in March 2004, CD4 262, Viral Load 61,000. Two months later, in May, my CD4 was 317 and viral load 334,000. I'm 21 years old, and I'm not sure how long I've been infected--the maximum amount of time could be 4 or 5 years. Regardless, it seemed pretty clear to my doctor and I that I was not in the early stages of infection, and treatment was necessary. I started Kaletra, Viread and Emtriva in May immediately following that 334,000 viral load result. At four weeks (in June) my Viral load was down to 1800, but six weeks after that (at 10 weeks on meds total) it was only down to 578, and four weeks after that (fourteen weeks total) it had only gone down to 401 copies. Obviously, I had a very good initial response to treatment (in the first 4 weeks) since my viral load plummeted from 334,000 to 1800. In fact, even if the 334,000 was a 'blip' or error, going from a viral load of 61,000 to 1800 copies in 4 weeks is pretty good. But the fact that the numbers haven't gone down much after that is a bit worrisome to me. I've been extremely adherent to my meds, so I'm not worried about drug resistance that I may have brought upon myself. Instead I'm worried about the possibility of hidden resistance that I may have had before I even started the drug regimen. I had a genotype test before I started meds and it came out fine, but that test was really meaningless because if I had any pre-treatment resistance, it was probably a small sub-population. Basically, i'm wondering if it would be out of line to demand a phenotype test and, at least, the temporary, if not permanent, addition of a fourth drug at the next visit (in a few days), in order to force me down to undetectable. I know that with people who start with my initial viral loads, it is not uncommon for it to take 6 months to reach undetectable, but I feel like at 14 weeks, I should be easily below 400 copies, especially with the extremely good response I had within the first month of treatment. And with the rate of decline of viremia itself declining at the rate it is each month, it seems unlikely to me that I could possibly reach less than 50 copies at 6 months.
Basically, I'm asking (a) how bad you think my numbers really are, and (b) whether I should demand a phenotype test at the next visit. Money really isn't that much of an issue for me, so I'm willing to pay for it, even if insurance is not.
Response from Dr. Sherer
The best early discriminator for overall response is the viral load decline at 4 weeks, which in your case exceeded 2 logs - an excellent response. As you suggest, its not uncommon for 4-6 months to be needed to achieve the <50 copy theshold. I don't think your numbers are bad at all, though I can hear that you hoped the very rapid decline would continue. Though to a lesser degree, you still achieved a 'significant' decline in viral load, i.e. > 0.5 log or > 3-fold change - in your next values. I would advise you to be patient and await your next values.
You and your doctor will certainly want to do a genotype and/or phenotype test if the next value is higher or unchanged, but I would not advise you to 'demand' it now, and to avoid 'demanding' as a strategy with your doctor; better to negotiate and understand the reasons for his or her recommendations.
Insurance & circumstances causing forced drug holidays
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