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after 3 years can i have a break?
Oct 26, 2002

i am hiv+ and on med for the last 3 years viral load undetectable and cd4 1250 over the total period cd4 has been between 650 and 1250 - only sugar and cholestrol level have been high but are good at present. i would like to take a break from taking meds. my doctor advise against this what do you think ? (retrovir,epivir,sustiva)

Response from Dr. Cohen

Well, we know something about what might happen if you did take a break - we've seen results from others to give us some good understanding of this.

First - there are different ways to stop. Mostly, when people talk about taking a break, they mean stopping meds for weeks, months or however long they can to just have a break for a while. The first lesson noted from others who've done this - is that HIV often comes back sometime after a week or more. And when it does, it usually grows back to the level it was before you started meds in the first place - back to the same "set point". And when that happens - there is usually some kind of CD4 count drop. The size of the Cd4 drop can vary - but there is one key lesson - which is that people are at risk to drop close to where they started from - or their lowest ever count - in the first few months off meds. This does not always happen, but it can. And when it does - we have seen some big drops - especially in those who started meds with counts below 100 cells. And sometimes people do have symptoms when they stop - a few percent seem to get the symptoms similar to what some feel when they first had HIV infection - with fever, rash, and other signs of a virus infection. Usually this is mild, but sometimes it is uncomfortable.

But others - perhaps if I understand your story - started with high counts. And in that case when people stop there can be a small drop in the counts - but you may feel nothing and do well. And you may have the ability to be off meds for months to weeks to even longer depending on what happens - and how high your viral load goes - and ultimately what your decision making is based on to decide when to restart meds.

This approach however is important enough so that the NIH in the US has sponsored the largest study ever to see if stopping is actually a good idea in the long term. Since we know people can stop. The question is - should we stop? Is it a good idea - even better to be off for a while? Or is it better to keep HIV under control and not take the chance to see what happens when HIV comes back when we stop? We don't know for sure - so there is a study going on now all across the US and Australia that compares people who stay on meds to those who stop when their counts are above 350. You can read more about this research trial by clicking on the link.

Now, taking a long time off meds is just one way to stop. Research has gone on - and still is going on - about brief times off meds. At our group in Boston for example, we are researching short stops - stopping meds just for 2 days per week, staying on for five (the FOTO study). You can read more about it on our web site. It is based on the research also done at the NIH showing people can safely stop at least some combinations for as long as a week before HIV comes roaring back...

There is much to learn about stops and restarts - and some research has been done, and a lot more is underway. But, in sum, we don't know if you should stop. We do know you can.

One last point - especially for those on meds like Sustiva. If the viral load is not <50 copies ("undetectable") there is a bigger risk of developing resistance to some meds - when stopping combinations containing meds like Sustiva, or Viramune, or Epivir. So if you stop at all, you should stop preferably when the viral load is well below 50 copies. Otherwise there is a risk of resistance when stopping some combos. And some who are even more cautious make some med changes prior to stopping to minimize the chance of any resistance when we stop meds. But that is another story.

Hope that helps and doesn't confuse you more...



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