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Jan 2, 2007

I have been positive since July 01 & have been on medications. My averages have been: CD4 count--1,263, CD4%--37% and viral load has been predominantly undetectable with one jump to 885 in 2003. I was on a regimen of Trizivir and Viread. The middle of April 06, my doctor switched me to Epzicom, Norvir and Reyataz stating that it was believed that a regimen of meds from two different drug families would have more longevity against resistance. The test results three months later showed: CD41,221, 39.4% & undetectable. In Nov. 06, my test results were: load jumped to 25,628, CD4 count was 1,429, 46.1%. My doctor took me off the meds until the results of a set of regular tests as well as resistance tests were received. While waiting for the resistance test results, he did give me the results of the regular tests, which were available sooner than the resistance tests: CD4 count766, 34.8%, & viral load undetectable.

My doctor stated that he may want me to go off meds for two to three years, depending on the resistance test results. I have a huge concern with this. To me this is very riskybasically allowing me to progress towards AIDS. I had been doing very well with meds and healthy living. My big philosophy is an ounce of prevention is worth a ton of cure. Before meeting with him, I wanted your advise-- pro's, con's & concerns to help prepare me to discuss this. What rationale and what risks are there for intentionally going off meds for any period of time..particularly for such a long period? Should I seek a second opinion?

Response from Dr. Daar

Thank you for your post.

A key piece of information that would assist me in answering your question related to what the lowest CD4 cell count you have ever had and whether you ever had repeatedly detectable viral loads while on therapy since July 2001. The first question is most important as there is considerable evidence that when people stop therapy CD4 cells decline back to where they were at their lowest point. Consequently, those who started with less than 200 or 300 cells/uL will likely return to that level and probably are best left on therapy if at all possible. In contrast, if your numbers were never less than 350 or 400 cells/uL it may not be unreasonable to be monitored off therapy. Regardless, the decision as to when therapy should be restarted should be based upon how you feel and your CD4 cell count, not an arbitrary period of time.

In the more general sense, one could argue that someone who is tolerating medications well with undetectable levels of virus may choose to remain on therapy regardless of their lowest CD4 cell count. We simply do not yet have all of the answers regarding when therapy should be started and one of the main reasons to not treat everyone is because of potential side effects. Until more information is available each patient and their provider must balance these issues and decide what is best for the given individual. In your case it sounds like you might favor remaining on treatment, which in my mind would be a reasonable thing to do.

Finally, I would be remiss to not take this opportunity to discuss several recent studies that received much attention in the press and are directly related to this topic. In particular, there was a study called SMART that took people with CD4 cells greater than 350 per uL and stopped their medications with the plan to restart them when they dropped to below 250 cells/uL. They compared this strategy to just continuing therapy as is more typically done. This study showed that those who continued therapy did better than those who stopped with the plan to restart if CD4 cells declined. It is important to note that many in this study did have a history of low CD4 cells and there still remains much to learn regarding why the outcomes were different. Nevertheless, for now most would recommend that this particular strategy not be routinely used in the clinic. For what it is worth, a smaller study that had a similar design only restarted therapy when CD4 cells dropped to below 350 cells/uL (instead of 250 cells/uL as in SMART) showed little additional risk compared to continued treatment. While these studies have received a great deal of attention, ultimately the best decision for you will only come from further discussion with your primary provider as to the overall risks and benefits of continued monitoring off or on therapy.

I hope this helps. Best, Eric

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