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what should i do
Nov 26, 2001

I have been hiv+ for 10yrs. I have been on Viramune and Epivir for 4yrs. I started Ziagen about 6mo ago. My doctor wants to stop my meds because my vl is less than 50 and my cd4 count is 1303.I took Interferon for 1yr. Hep c is gone, took hep b shots. Do I have a good chance of staying healthy if i go off these meds? It took a long time to find meds.that worked for me. thank you Kathy

Response from Dr. Cohen

Well, this issue of stopping meds is one that recurs for many people. What is not clear from what you write is why -why your doctor suggests you stop. There are concerns for long term toxicities and side effects with these meds - and more often this leads to people taking them to ask about stopping. However - as you don't mention this part of the story as to why the doctor would suggest this to you - let me fill in the issues involved in general.

What we know is that with such a high Cd4 count, you are protected against essentially all illnesses in a way that is similar to someone who is negative for HIV infection. And so the next question is what to do next. Should you just stay on these pills every day each day from now on - since they did so much good for you?

One answer is yes! As long as there is no evidence of any side effects on these meds - it is certainly OK to just keep going. One subtle but important variation on this theme is the research going on about very short interruptions - of fewer than 7 consecutive days - before restarting meds. Since, in general, when someone stops for a few days and restarts for some number of days - we still can see HIV stay below 50. And this work is being done to best understand what are flexibility is for someone whose HIV is under control, as with you.

But the other research going on is about what happens when people stop for longer periods of time - more than 7 days. Since, the concern is that staying on these meds day after day may build up some longer term side effects that will interfere with our ability to use these meds safely for the next several decades... And in general, what happens when someone stops is that HIV starts to regrow. There is some fine tuning that can be considered in those who stop a combo containing meds that stay a longer time in the body - as with Viramune... but putting that aside for now, some have just stopped. And when HIV does regrow, it can come back slowly or more rapidly. And this is difficult to predict. And when it comes back there can be some drop in the CD4 count. And it may matter how low your T4 counts were in the past - this may have some impact in how fast the counts drop again. But some note a very slow loss of cells - a few have even been lucky enough to see a very low viral load and stable Cd4 cells off meds. And some can stay off meds for a few weeks, while others can stay off months. Now, there is some research hoping to use this time off to stimulate your cells to learn again how to control HIV - like a vaccine. But even if this doesn't work out, the time off may simply allow the toxicities of these meds to fade away, allowing some 'rest time' for your body to recover from whatever they do. And then, whenever it is you do restart - your body may have fewer side effects in the long term with these rest periods built in.

As I mentioned, if these meds work now, they should work after you stop and restart. There are some variations about how to manage the long lived meds like viramune - I will leave that to another answer, as this one is getting pretty long...

But these issues are pivotal right now. And as a result, the NIH in the US is funding the initiation of a study to compare the two approaches I describe above - continue the meds versus stops and restarts. You can read more about this on the web site - since this trial is just getting started in many cities in the US and in Australia. Even if you don't live near the study sites - you can learn more about these two approaches - and why your clinician mentions one of the two arms - stopping - to you.

What the best thing to do is next is uncertain - that's where research comes in. But both approaches have been done and can be done with good outcomes when done right. Hopefully in time with enough participation in these types of studies, the answer to this question will be filled with far more answers than questions...

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