When to know when to start meds?
Sep 17, 2009
Dear Dr. Young:
I've been reading that meds should be started when CD4 is between 350-500. It is a big decision for us. I talked to a 62 year-old who was diagnosed in 1988, but didn't start meds till 2006. Does that sound right first of all? If true, it saved him possible toxicity from meds and resistance. Having said that, I've read where even if your numbers are good, HIV could be doing unseen damage. I've also read where people with awesome numbers get several OIs while others with low CD4's feel great. Is it that everyone is different? I've also read where there are other bloodwork indicators (can't think of what they are called)that indicate whether you'll get certain fungal diseases like thrush. Also, when I was infected (or think I was infected)I got this mono-like illness where I was so tired with sore and swollen lymph nodes that lasted for years. I've talked to some that had this same response and others who didn't. Is there any research into those who get swollen lymph nodes? As I understand it, swollen lymph nodes means your body is fighting. I'm pretty sure I was infected in 2001. I'm not on meds yet and have CD4 of around 800. My doc thinks I must have been infected within last year or so. The only possible exposure I can think of was in 2001. Given my numbers, could I be right about infection in 2001? Does it say anything about the strain of virus if it was 2001 and still not on meds? Does the reaction of swollen lymph nodes that I had for years tell anything that my body was fighting the virus? I've also talked to some who say they knew exactly when they were infected and started meds right away. I know from my own experience CD4 can drop and shoot way back up. If CD4 is dropping over several tests, would that be time to start--even if you feel good? It is all so confusing because some seem to progress so quickly and others seem to go years not needing meds.
Thanks, Ted in Louisville
Response from Dr. Young
Hi Ted in Louisville,
Thanks for your post and notes.
Unfortunately, there's little information that correlates the severity of acute infection with the trajectory of HIV disease, nor the strain of HIV virus, per se. On the other hand, there is experimental data (that is to say, not incorporated into routine clinical care) that correlates the replication capacity (obtained during phenotypic testing of HIV) to the rate of CD4 cell decline and risk of developing opportunistic infection.
As for CD4 cell decline, repeated testing is needed to get a sense for how much one looses over time, since there is quite a lot of variation in the tests from day to day.
If your CD4 cell counts are rapidly declining or if your approaching thresholds to initiate treatment, then I'm philosophically proactive about this, and would probably consider initiating treatment. Exactly the best CD4 to start remains an area of hotly contested and fast moving research.
I'd caution you (and our readers) from extrapolating from single clinical cases to their own clinical situation- often the memorable cases are the 1% outliers with atypical (or non-average) disease natural history. Such may be the case of your 62 year-old friend.
Medications should (as you point out) be considered as a balance of risks and benefits. Yes, older treatment regimens were fraught with side effects and toxicity and waiting to start these medications made sense in many cases. Current medications are clearly better tolerated (ie., lower risk) than older ones, and the pendulum for starting treatment therefore is moving towards earlier initiation.
Current US and international guidelines use a CD4 count of 350 as the starting line, but several recent publications and presentations suggest strongly that there is survival (ie., life and death) benefit for starting sooner, even among asymptomatic persons-- perhaps with CD4s that are below 500, maybe even sooner.
Hope this helps, BY
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