Aug 21, 2000
I have been HIV positive for about 3 years and on meds since I was diagnosed (at that time eradication was still thought to be possible). At that time my CD4 was around 550 and my viral load around 12000. I have had undetectable viral load since starting meds and my last CD4 was >900. My doctor has recently brought up the idea of coming off meds and waiting until my CD4 was in the mid-200's until restarting. He said recent evidence of 2-year data was that this was ok. I am a bit nervous about this. Can you offer me any words of wisdom? I have no significant side effects from meds, but I understand the longer I take them the more likely it will be that I get them.
Thanks for your help.
Stephen, in Vancouver
Response from Dr. Cohen
Hey Stephen. Hope you are enjoying living in one of North America's finest cities... and I just came from there where I tasted some of that pear/gorgonzola ice cream at the International Ice Cream store - a must try!
As for treatment interruptions. It is probably recent info from the Vancouver HIV research team that in part led to this suggestion. That group looked at who was still dying despite treatment, and found that those who started treatment with a cd4 count below 200 were still at higher risk of dying despite treatment. BUT they reported no advantage to starting treatment when the Cd4 count was just over 200 versus when it was well above 200 -- and this information fits in with some of what has been discussed for years -- which is that HIV treatment can be postponed, since immune recovery is often impressive, even when treatment is delayed. Now, there MIGHT still be some advantage to treating at higher CD4 cell counts -- but we lack a lot of data to convince us that this is always the case.
So does that mean everyone should stop? Well, the frustrating thing is that we don't know for sure the right answer to this one. There are however theoretical advantages to treating earlier and staying on a successful combo. While eradication is no longer considered likely, there is still much to be said about preventing the destruction of our immune system in the first place, rather than allowing it to happen and then rebuilding it with meds. But -- since there are problems in being on meds for some, there has been an increase in the urgency to conversations about how we can safely delay treatment if treatment has important side effects. And one such discussion leads to considering med interruptions and treating later -- like when the CD4 is nearer to 200.
This strategy question is SO urgent that I am working with a small group of researchers here in the US to propose a study to the NIH that would address exactly this question in a study. Since we can see that both approaches have validity. And there is no way to know if either approach is intrinsically the winner -- this is when only research can answer the question.
But the answer to this is years away, and the study isn't happening yet. So what to do now? Well, if you did stop, with a viral load of only 12 thou, you would experience a slow loss of CD4 cells on average. So you could monitor off meds without much predicted risk to you in the next few years. And you can restart meds with a reasonably high likelihood that this combo would work for you in the future. (There are potential complexities about stopping some of our meds that may be worth discussing with your clinician if you do decide to stop.)
But it sounds like you just don't quite understand why your clinician believes you should pause for now. And if you don't understand it, no wonder you aren't sure about what to do. Now, even if you do understand the viewpoint, you may not agree -- again, we just don't know if staying on or stopping is ultimately the better strategy. Whatever you do however, it sounds like you are doing well and would continue well in these next months to years either way.
PS - the mint chip was also totally worth the drive...
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