Asked the doc, "why is my ceiling 800?"

[randym431]

I haven't posted here is a long long time.
But I'm still here and kicking.
Diag in 2005, currently on Atripla for many years now.
Very stable. A boring patient my doc tells me.

My CD4 has reached and remains in the 800's for 10+ years now.
Occurred to me, why if I am doing so well and have been undetectable for all these years, why hasn't my CD4 recovered to upper normal levels?
1200 - 1500?

Well, the doc feels it has to do with how badly damaged the immune system originally was when first diagnosed.
In 2005, my CD4 was 85 and % somewhere around 5. VL one million.
So according to the doc's experience, 800 is probably the best I can expect to do.
And he didn't want me to whine about that. That is actually very good, he says.

Oh. And he also suggested I switch too annual checks. Once a year.
Something they are suggesting to their all patients that have remained stable long term and issue free.
I fully agreed.

[Wade]

Hey Randy,
Could be that is where your CD4s would be even if you were negative.
Sounds like you are doing great !
Don't be a stranger

Best, Wade

[leatherman]

Occurred to me, why if I am doing so well and have been undetectable for all these years, why hasn't my CD4 recovered to upper normal levels?
1200 - 1500?

Oh. And he also suggested I switch too annual checks. Once a year.
Something they are suggesting to their all patients that have remained stable long term and issue free.
I fully agreed.

the normal range of cd4s is anywhere from 400 to 1500. this is a huge range because everyone's immune system is based upon their genetics. Most people will end up somewhere in that range regardless of being HIV+ or HIV-. Some people will top at 400 and some higher. Most will never reach >1000. For all intents and purposes, a cd4 count of 500 can be just as good as a count of 800. Some people with low counts may never have health issues while someone with a count in the 1000s could have multiple health issues.

Without a cd4 test prior to your HIV infection there is no way to know what YOUR normal might have been. Your counts are currently DOUBLE the base of the normal range, so why would you think they would go higher?  Always remember it's not how many cd4s you have (although the general rule of thumb is "more is better") but how will they work (something we cannot test for at this time)

Studies have shown that people who have a low nadir count (that is, a very low count for their lowest count, normally <100) often take a longer time to recover and do not recover very high. Clearly your immune system has beaten the odds and recovered very well. 

they are not just "suggesting" fewer yearly tests, the cdc guidelines now call for fewer viral load and cd4 testing

After 2 years of ART, VL consistently suppressed and CD4 consistently 300-500:
Time between viral load test can extend to every 6 months for patients with consistent viral suppression for >=2 years.
With the cd4 test done every 12 months

After 2 years of ART, VL consistently suppressed and CD4 consistently >500 cells/mm3:
the CD4 test is Optional

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)

one of the biggest reasons the cd4 is used less as clinical test now, is that once a person is above 200 and the danger zone of OIs has passed, there really isn't need to know the cd4 count. There is no medical way yet to elevate cd4s so the only thing we can do is suppress HIV to allow cd4s to recover. Without being able to measure the strength of cd4s, knowing the absolute count really doesn't tell you or your doctor anything about your HIV disease or your actual "health". As I mentioned earlier, some people are healthy in the 300-500 range (that would be me! nearly problem-free in the very low 300s for a decade) and some people in the 800-1200 range have health issues.

[BT65]

Hi Randy, if I am reading correctly, you were diagnosed in 2005.  And maybe you posted in this forum by mistake, but this it the pre-haart long term survivor's forum. You can only post here if you were diagnosed before 1996.  Thank you for your cooperation.

Betty