Question
I'm a rapid progressor – is my life expectancy reduced as a result?
18 December 2008. Related: All topics, CD4 and viral load, Living with HIV long-term, Newly diagnosed, Starting treatment.
I’m a rapid progressor – is my life expectancy reduced as a result?
I was diagnosed in late 06 and i contracted the virus only months before. Despite Dr’s assuring me that i would be ‘many moons’ away from meds, I progressed very rapidly and my CD4s were around the 315 mark when the Dr informed me i should begin meds. This was only 12 months post diagnosis.
I am unfortunately part of the unlucky 2% of rapid progressors. When i ask my Dr whether this will effect my life expectancy – he replies “it won’t”. However, i just want an honest answer. I know recent studies have shown that life expectancy for someone recently diagnosed with HIV is circa 34 yrs. But does this study base its findings on the patient being med free for between 5 – 10 yrs? In other words if someone, like myself, doesnt have the luxury of living without med's for 5 – 10 yrs, then this will surely reflect in my life expectancy. The longer you are on meds, the more risk of resistance and less med options.
Therefore does it make sense to say that a person who begins meds within 2 yrs of being diagnosed will live a much shorter period? Are there any studies conducted on this?
Answer
No. It just means you needs to start meds earlier.
Once treatment reduces your viral load to undetectable your life expectancy is the same as someone who started treatment a bit later.
The most recent research may show that your need for earlier treatment to be better in the long run. Currently, many researchers think that the difference in life expectancy between HIV-positive and HIV-negative people is explained by the many years that people spend off-treatment, when their immune system is in over drive and permanently in a state of inflammation – even with a good CD4 count.
25% of people need to start treatment wihtin 2 years of infection – and this excludes people who start during seroconversion or within 6 months because of severe reactions. So you are not that unusual.
The average time is five years, but 25% start within 2 years and the other 25% manage without treatment for an average of over 10 years. You can see there is a large range, but this is skewed to earlier treatment.
The results come from the UK Seroconverters Register and were published earlier this year in the journal AIDS.
The relevant part of this paper is posted below if you’re interested in the technical details.
Considering the 940 patients seroconverting in 1996 or later and with follow-up therapy data, the median time from seroconversion to HAART initiation was 3.9 years (interquartile range, 1.3-9.2 years). To assess temporal trends in the time to HAART initiation, we considered the 25th percentile (i.e., the time by which 25% of individuals had started HAART), since the median had not been reached in all calendar periods. This changed from 2.1 years in 1996-1997 to 1.5, 0.8, 1.2 and 1.3 years in 1998-1999, 2000-2001, 2002-2003 and 2004-2006, respectively (P-trend = 0.0001). The strong statistical significance can mainly be explained by the difference between 1996-1997, when HAART was less widely available, and subsequent years (excluding 1996-1997 year group, P-trend = 0.32). In addition, the results could be driven by the proportion of individuals starting treatment in primary infection. Excluding persons treated within 6 months of seroconversion, the median time from seroconversion to HAART initiation was 5.0 years (range, 2.1 to > 10 years), and the 25th percentile of time to starting HAART was 2.5 years in 1996-1997, falling to 2.0, 2.0, 2.0 and 1.4 years in 1998-1999, 2000-2001, 2002-2003 and 2004-2006, respectively (P-trend = 0.001 overall and 0.23 excluding 1996-1997).
Ref: Ewings F et al. Survival following HIV infection of a cohort followed up from seroconversion in the UK. AIDS:Volume 22(1)2 January 2008p 89-95.
thanks Ivan – it sounds like you have had a rough year but it is good that you are finding out everything you can about your own situation and becoming and expert in your own health. Please let me know if you want me to email the articles we discussed.
thank you simon for a stimulating and informative phone call on this subject.
Not sure its made me feel better about my situation but has given me food for thought.
Hi Ivan
It is difficult to comment in detail because individual responses to HIV can vary so widely. There is also such a wide range of “normal” CD4 levels. It might be that your first result was abnormally high or not accurate.
Even though it would be reassuring if your count was higher, it is still important and good that you started early treatment. The likelihood of HIV causing health problems in the future is still very low as the undetectable viral load means there is such low levels of virus.
Also, HIV-related problems rarely occur with a CD4 count above 350.
If you would like to talk about this please give me a call on the i-Base phoneline.
I have the same question as above but i am one of those who started meds within six months of seroconverting. I started four months after diagnosis.
I was diagnosed with a CD4 of 980 but it droped at a rate of 150 a month was down to 360 even having been on meds for a month at that point. I was very ill at the time and still have very complicated health problems even though i had a previously unremarkable health history.
It’s been a year since my diagnosis now and i am now undetecable but my CD4 has only recoverd by 5. I can not see how i could have the same life expectency as a ‘regular’ progressor.
I think by reyten and nivor, you are talking about atazanavir (tradename Reyataz) and ritonavir (tradename Norvir), although the names you use may be generic versions of the same drugs that I just have not heard of.
I added this note in case you want to research for online information on your new drugs.
Either way, the new treatment is much more likely to work than it is to fail – you are just switching similar treatments because of side effects.
Everything should be fine – good luck though…
I have been on medicines for 7 months. My VL is undetectable and CD4-350. The problem is taht I started on Sustiva and Truvada, but had to switch to nevirapine as Sustiva was sending me nuts. I used nevirapine for 6 weeks and then doctors found my liver and would have damaged them in another 2 weeks. That is why I am currently on Truvada, reyten and nivor, which has to be kept in fridge and take with food. What hapens if this lot doesn’t work?