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Sep 29, 2008

In the early 1990s I was diagnosed as having AIDS based on a CD4 count below 100, wasting syndrome, thrush, and several other OIs.

Over the past years my CD4 count will respond to a new treatment by increasing to the upper 300 to lower 400 range for a period of 6 to 12 months followed by a slow decline back towards my baseline. I experience about 2 to 4 years per drug combination prior to significant declines followed by a change in regimens.

Today I am confused as to where I am classified in terms of this disease. Would you be able to clarify a few points?

Is my immune system irreparably damaged due to the extent of the disease progression when I was initially diagnosed? (Permanent damage vs. current treatment limitations)

The medications lower the viral load to an undetectable level, yet my immune system does not fully recover. If the virus is suppressed, why are my CD4 counts declining instead of rising?

Is a person cured of AIDS if/when the CD4 count rises above 200 despite ongoing treatment for controlling HIV, wasting, drug side-effects, and other OIs? Obviously, if treatment were to be discontinued, the outcome would be negative (death from AIDS).

These questions are important to me as I am trying to establish where I am in terms of this disease, what opportunities are realistic to pursue, and financially how to prepare for the later years of my life. I believe many other long-term survivors are also entertaining the same questions.

Further, I see a term used within the media of HIV/AIDS being a manageable chronic condition. Possibly, for persons who begin treatment with an intact immune system with few or no OIs. However, those of us who are diagnosed at significantly lower CD4 counts (advanced disease) and receiving various treatments for several years are more challenged.

I find the use of the term irresponsible in that it does not state the importance of avoiding infection (initially) or the realities many of us live with every day.

Thank you for addressing my concerns and I look forward to your reply.

Response from Dr. McGowan

You raise a number of very important and challenging issues. There is much ongoing research to help address these points.

Recovery of CD4 counts on HAART is called immune recontitution. It has been observed in a number of trials that the level of the CD4 count at the time you start therapy may effect the extent of the recovery. Most people will have a benefit (as you have) and will get their CD4 count up and out of danger, but they may not reach the highest levels of increase if treatment is started late. It is not clear what the optimal CD4 count should be after immune recovery. Also, there is likely to be a range of acceptable values.

It is important to look at 2 values when you are evaluating the CD4 count: the absolute number (which you have mentioned), and the CD4% (or CD4/CD8 ratio). The CD4 number can be more variable than the %. If the % is stable I would be less concerned about fluctuations in the CD4 number as long as your virus is always undetectable.

Discordance between the CD4 count and the viral load (when the CD4 doesn't go up enough despite an undetectable viral load) can be influenced by many things: age (over 50 slows recovery), nadir CD4 (the lowest the number was), immune activation (other diseases or infections that stimulate the immune system and can cause a drop in the CD4 independant of HIV), medications (like interferon for hepatitis C), or incompetely suppressed virus replication (especially if there are "blips" in the viral load).

Regarding the "AIDS" diagnosis, we generally do not remove it once the CD4 count rises. Until we know the extent and durability of immune reconstitution we should keep the diagnosis since many people's health benefits will depend upon it.

The good news is that if you can keep your virus suppressed your long-term longevity looks good. Recent data indicate that life expectancy is approaching HIV-unifected rates. It is about two-thirds of HIV uninfected overall, but much of the difference may be driven by people who lack access to treatment or can't maintain an undetectable viral load.

Hope this helps.


starting treatment on phi , please answer???

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