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Stopping meds
Mar 24, 2002

I'm so worried about stopping treatment. But I have been on treatment for 4 years. I got it too early--my cd count was 500 and viral load low. but the doctor and I had not idea then...I want to take a break...my viral load is undetectable and cd4 is 700. Can I stop? what's your opinion?

Response from Dr. Cohen

For years, there have been some who just did not feel right on their meds. And for some the only option was to stop. And so researchers have been focussed on this issue to learn what might happen if someone did stop. And here is what we have learned.

Within several weeks, HIV usually comes back growing in the body at levels very similar to what you had before you started treatment. Sometimes there is an initial viral load peak that is even higher than the setpoint - but it then usually come back to this same setpoint weeks later if that happens. With this increase in viral load can be a drop in the CD4 count - how much a drop can vary in part by how low it was before treatment. And given that your count was 500 and is now 700 - and you had a "low" viral load off meds - you may see only a small drop in the Cd4 counts. Now, when it comes back in the blood there are some who have symptoms from this - but others who don't. Very much like the initial exposure to HIV - that for some was associated with symptoms while for others wasn't noticed.

And then what happens next is the key uncertainty - since again some can have a very slow decline in the Cd4 counts and stay stable for months - while others may have a more bumpy ride. Your low pretreatment viral load is the most encouraging part of the story - with a low viral load the decline in Cd4 cells can be slow and without symptoms. But it is a bit unpredictable. So we continue to be uncertain about this - and offer the option of changing the meds you are on in case the reason you want to stop is fixed by changing the meds - so you can continue controlling HIV and feel even better than you do now.

But as a result of these observations - the NIH in the US has funded an enormous clinical trial to see if stopping meds is worth doing - treating only when the Cd4 counts need the help -- versus a strategy of just maintaining control with the best meds we have. There are a few such studies ongoing - one of them has a web site and it is called the smart study. As many want to know if they can and should stop - and we know that some can do this and the question is if this is a good idea. And that - well, we just don't know. So this research trial will be one way to help answer the question. For now, it is a conversation to have with your provider. But if you need a break - it is fair to say that the reason we can do this trial is that people can stop meds and it can be OK to do. People can do OK despite the return of HIV.

Hope that helps.



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