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Stop meds after starting early?

Mar 27, 2004

I am facing the decision of whether to stop meds or not after starting 3 1/2 yrs ago 3 wks after seroconversion. Currently on Epivir, Abacavir, Sustiva. I have been very lucky with vl consistently under 50 copies and CD4 above 1000 at over 50. I tested during serocoversion with vl >500,000 and started current regimen 3wks later with vl around 6000 and CD4 750 at its lowest.

The clinical trial where I receive meds is ending and I am trying to get educated opinions on whether to stop or not. I have no side effects/body changes - other than occasional drunk feeling eating to close to when I take Sustiva (me and everyone else I'm sure)

What would you suggest - do in my shoes? I am worried about long term toxicities, worried about losing "ground" so to speak and wondering if people are able to go back on the same regimen that was working well for them before they stopped. The hit hard, hit early benefit theory isn't mentioned as much now as it was. I hear more about long term toxicities now. I don't want to mess up a good thing, but don't want to be on meds if I don't have to be.

Any advice would be appreciated and I realize what a lucky position I am in.

Thank you.

Response from Dr. Cohen

Ahh - a familiar question. Started meds at good counts. Now the counts are even better. So do I stay on meds for the rest of my years given concerns for long term cumulative toxicities, or do I take a break and see what my immune system can do for a while off these meds. Less meds, less med toxicity it seems. But more HIV floating around...

So. First - what would I do in your shoes? Well, the first thing I'd do is get new shoes - that color and style is so last year...

But after that you ask?

Well. This question is at the heart of HAART. We've done so well to identify several combination that work to stop HIV. They'd work with the counts you had when you started - and they'd working even with more challenging counts - lower CD4 counts, and higher viral loads. That is a tribute to the potency of our current combinations. And because of the long term toxicity concerns we have about treating not just for years but for decades - the current treatment guidelines suggest deferring treatment for someone who would walk in the door with the counts you now have. As we have learned that most all with these counts off antivirals stay well for years and years with no clear evidence of damage that we can detect from ongoing HIV replication. IF there is damage done - it apparently largely reverses once on meds - even when meds are started with counts as low as 200. So if you did stop meds - you might have years and years without treatment - with normal health anticipated - postponing treatment to some future date when you and your lab tests told us it was time to restart.

And so we know from years of study that we can continue these meds with few toxicities. You are on for example one of the combinations with a great track record so far of few side effects over the years we have been monitoring. But - you also certainly can stop. That too has been done. So which is better?

Short answer: Don't Know.

It is for this reason - and because you and so many others have this conversation in clinician offices every day in those countries where these meds are available - that there is a very large international study attempting to answer this very question. You can read more about it by clicking on this SMART study web site. Note the web site has study locations in case you're interested...

The design of the study is very simple. For those like yourself with a Cd4 count above 350 the computer flips a virtual coin. Half of the time it says to stay on your meds. Such as the combo you are now on. Or change to a better one if you find one you and your clinician team think is better. But keep HIV under control. The other half on this study are told it is time to stop meds. Take a break, take a breather off these meds. Since what we've learned from many studies over the years is that you can stop. What will likely happen is that at some point HIV will start to show some level of viremia. Perhaps heading back to the viral load you had before starting meds. And the CD4 count may change over time - given your counts however, it might be anticipated based on others' experience that you would see a slow drop in the CD4 counts given the low viral load you had prior to these meds, and decent counts you had before starting. That combination predicts the best outcome for those who do stop. And then we'd monitor to see how long you can safely be off. Defining when to restart is also in the protocol - we use a CD4 count no lower than 250 as a trigger - though symptoms and other criteria are also used if they're relevant. And - importantly - this arm does not just stop once. It stops the second time - once you're back on meds and the CD4 counts get back above 350 - we suggest stopping again - and restarting at about 250 - to give people the least amount of time on meds. And for the next several years - we'll compare what happens for those on meds every day - versus those on meds intermittently. And so far over 1600 people in two countries (US and Australia) are on this study. Soon to join will be study sites in Europe and South America - as this question is of such importance that many sites around the World are lined up for participation.

If you DID stop - on this study or off of it - one more caveat. We have learned that Sustiva has blood level that can be present for days even after stopping it - longer than when compared to other antivirals. And so - after this combo is stopped - there may be some days when only Sustiva is left in the blood stream - and if HIV starts growing at that point (since Sustiva alone may not be enough to control HIV) - there is some risk that this can lead to Sustiva resistance. As a result - there are guidelines of how to stop safely - protecting the Sustiva (and the other meds) so that they'd stay fully active for the years to come. Since like you - we'd want this combo to be useful to you not just for the first combo - but for each time you needed one.

What's the right answer? Simply put - we're not sure. There are pros and cons, plusses and minues, good news and bad - for each arm of this study and for each of these approaches. We are a bit discouraged about using treatment interruption to "boost" the immune system and its response to HIV for those who started early - which highlights the importance of reconsidering the best strategy for those who did get recognized and treated early. While most clinicians you ask will have an opinion of which "arm" of this study will be best in the long run - all should also agree that we truly don't yet know - we're guessing. And half are guessing wrong...

So it is up to you. You can guess which arm / strategy to go with next. Or if it is an option - you can join this study to help answer the question...

Hope that helps. Good luck.

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