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What are the chances of having a normal life?Please Help!!!!!!!!!!!!
Jun 3, 2001

Hi Doctor. First of all I would like to thank you for all the moral and educational support you provide to all the HIV positive people around the world.

I have been HIV positive for three years but not on medication. My viral load is 50000 and Cd4 450. My doctor has recommeded that I start therapy soon. I am curently suffering from enlarged lymph nodes in my neck. What are the chances of me living on for a long time if I adhere strictly to HIV therapy and take my medications regularly?? Will my enlarged lymph nodes go away once my viral load is reduced and Cd4 count increase??? Will I live a normal life?? There is a lot of negative publicity around that says that HIV medications only extends the life expectancy of HIV positive people by 1.8 years and patients soon develop resistance to all the drugs available ?? Could this be true!! Do you recommend starting therapy now?? I read around on this site that starting therapy soon after the infection produces the best results!Could the fact that I have put off the medications for three years have a dramatic effect on my recovery and chances of living on for a long time??? I would be more than grateful if you can answer my questions as this will reassure me and drive away some of my worrying anxieties!! Thank you so much Dr Cal Cohen

Response from Dr. Cohen

You betcha. And thanks for the thanks.

First - I can't tell from here why you have enlarged lymph nodes. Usually this is just part of having HIV infection, and is a sign that your immune system is localizing the fight against HIV in these nodes - as lymph nodes are the battlegrounds where the immune system is concentrated. But it is also a place where invaders other than HIV may be brought - so if for example you have a toothache and enlarged neck lymph nodes, it is likely a reaction to an infection in the tooth. And so on. But if you are otherwise well with a few nodes on both sides, then it is more likely HIV. And in some ways a good sign - as the immune system is trying... and when we start meds, sometimes yes the nodes can shrink back down.

So when do when help with starting on meds? If the meds lasted only 1.8 years, when do you play the card? The good news and key breakthroughs of the past few years includes an understanding of what it takes to make a much more durable response. Far longer than 1.8 years. Indeed, if all goes right, it is reasonable to expect that at least some can have a normal life span despite HIV. What are the rules?

Simply put: (1) you must go on a combination of meds that are active against your strains of HIV (since some have acquired a resistant strain, resistant to some of the meds we often use first) (2) the meds must be potent enough to do the job of suppressing HIV to below 50 copies. Virtually all triples we use are amply potent for someone with your viral load and CD4 count however. Rank ordering which one is right for you is one of the key tasks for you and your care provider. (3) You must take the meds, as close as possible to each dose each day. Since when people do - the meds work best in terms of how long we see benefits. And skipping doses in an erratic way is one of the best ways to give HIV a chance to dramatically shorten the durability of the meds. Now, that also means that if you don't feel well on a combo, you should not suffer in silence, but check in with your provider to see if the side effects are expected to fade in time, or if an alternative combo is needed. But the key here is to not guess on your own, like I'll just take half as much... since that allows HIV to create resistance to the meds.

And if all is in place - then the meds appear to be working years later. Does that also mean decades later? Well, we don't know for sure yet as we've only done this a few years - but all signs suggest it is reasonable that it can. And while there are some complex side effects, we are working hard to either prevent or reverse them if they should happen.

So - do you start now, or wait? This is one of the central uncertainties in our field. It is OK to start now, and it is OK to wait even longer. In fact, the answer to this question is of enough importance that the US is this year setting up a study to compare those who start treatment with a Cd4 count over 350, versus those who start when the Cd4 count is closer to 250. And this, as well as other studies, are exploring whether therapy once started must be everyday from now on, or if treatment can be intermittent in some way.

And finally - given the exciting results seen when starting treatment very soon after infection - suggesting that our immune system can be harnessed to control HIV even off meds for periods of time - there are studies exploring if what we are learning there can be applicable to those who have waited - since that is most everyone we treat.

So no, you have not waited too long - you are fine where you are. And in addition to exploring with your clinician the timing of when to start, and what to start on, you might also explore some of the research opportunities that may exist where you are. Since these sometimes are a glimpse of how we might do even better...

Good luck.

so many questions to!
Lipa assay

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