POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: ScottPhxAZ on November 11, 2006, 01:14:37 am
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I was diagnosed this year in early August within a few weeks of infection, so I started with an incredibly high VL (which is normal for acute HIV). It has been difficult to compare/measure my VL with others because fewer than 10% of HIV+ diagnoses are made in the acute stage and there isn't a whole lot of info out there on initial VL levels. The only info I have found says that there should be a "rapid decrease" in VL after the acute stage and that after 6 months of infection your VL hits a "set point" (the point at which it will stay for some years). (John Hopkins AIDS Clinic)
The decision at the time was to monitor CD4 and VL levels monthly and see how the numbers play out. The doc and I fully expected the VL to plummet and the 2nd test confirmed that. But on the 3rd test VL spiked back up. All the while CD4 has been 650-950(22%). Hmmmm. Now I'm waiting for another set of test results and if the VL isn't on its way down then I'll probably be on meds.
This sudden prospect of meds has brought me back to these boards. I wasn't really expecting to be on meds anytime soon - I was thinking more in the 8-10 year range before CD4 levels dictated meds. Oh well.
So I'm curious if others know their VLs during the first 6 months of infection.
Scott
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I am a person Affected By and Living With HIV/AIDS ~ HEP C and BI POLAR for 6 years. CD4 ~ 217 and VL 28,000 Not on Medication. At 53 years old, I am an empty nested mother of 4 grown children. I experienced 3 monogamist marriages (at least on my side of the relationships) and a successful professional career in Finance for 23 years. My professional designations obtained career success however my most rewarding educational growth and life skill knowledge by my advocacy and activism in equal rights and eradication of discrimination within industry and government.
My CD4 and VL didn't fluctuate for 6 years. I stopped doing drugs 3 months ago and my CD4 is 114 and VL 380000. Go figure my Doc told me I have maybe 1 year. I am not on any meds yet.
:(
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Scott, hello
Dunno where this 8-10 years thing comes from...
- About one third of HIV-positive people will stay well for up to 10 years after infection, even without treatment.
- About 60% will start treatment after 4-5 years.
- 2-3% of people can become ill more quickly and need treatment much earlier.
- 2-3% can go for 15-20 years without treatment.
Your CD4 count is in normal range (starts at 500+). You really need, and can afford, 4 or 5 tests to see what's happening as a trend. Set point can take longer than 6 months (dunno where that comes from either, just some docs guessing in truth, needs 3-12 months for an accurate reading, depending on the individual). In the meantime your viral load may well go haywire, up, down and all over, so hard to judge on the basis of a pair of tests. Or even 3. That your CD4 is stable and hasn't plummetted to rock bottom is very good.
Opinion is divided over the merits of early treatment. More popular in the US. To intervene at the truly acute stage with combo, which is sometimes done on the (as yet unproven) basis this is a good thing cos it helps the body fight the virus better long-term and gives a lower set point, you's supposed to do it straight away ... like 3 weeks, 6 weeks, 3 months, 6 months (sez the theory, depending on who you speak to).
- matt (in the 60% / 4-5 year group)
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CApronda, what are you waiting on Christmas? Your doctor should have put you on Bactrim and started you on meds. I would look for another doctor ASAP. Any doctor that gives out a death sentence is a quack and should be ingnored.
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Dunno where this 8-10 years thing comes from...
- About one third of HIV-positive people will stay well for up to 10 years after infection, even without treatment.
- About 60% will start treatment after 4-5 years.
- 2-3% of people can become ill more quickly and need treatment much earlier.
- 2-3% can go for 15-20 years without treatment.
In the meantime your viral load may well go haywire, up, down and all over, so hard to judge on the basis of a pair of tests.
Thanks Matt. The 8-10 years was my attempt to tweak stats such as yours into something useful for me. I read 50% at 5 years, 75% at 10 years, 95% at 15 years for starting treatment. My issue with the stats is that they are predominantly made up of people who were already HIV+ for some number of years before being diagnosed. So I figure that since I was diagnosed early that the averages for me should skew in my favor. I've never seen a stat that tells how long the average person was infected before being diagnosed.
I would like to see a more quantitative explanation of "your viral load may well go haywire, up, down and all over", specifically for people in the first 6 months. Hence, my original question to see if there's anyone else here with VL stats during the first 6 months of infection.
Scott
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HIV Medicine - Acute HIV-1 Infection (http://www.hivmedicine.com/textbook/acuteinf.htm) may be of interest to you.
The diagram below is a classic representation of how viral load varies over time, with a high spike at the beginning, during acute infection, followed by a very sharp, big drop as the immune system brings the infection under control, and a gentle (or sometimes not so gentle) rise as the virus depletes the immune system, followed by another sharp drop and(hopefully) flat line on treatment. (A curve for CD4 count would be the inverse shape)
However, if you measured viral load daily the curve would not look so smooth, more bumps, up and down, as a set point is achieved, then more gently rolling, because the infection is under control and relatively speaking stable, but still variable to some extent. I cannot, though, find an easily accessible online reference to show this numbers wise (soz).
Pic from the i-Base generic guide to HIV and combination therapy (http://www.i-base.info/education/download/COMBO-generic.pdf) (116 Kb PDF file).
- matt
Now playing: For You (club Mix)
[attachment deleted by admin]
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This is a useful article (v scientific though) Biological and Virologic Characteristics of Primary HIV Infection (http://www.annals.org/cgi/content/full/128/8/613) esp cos it has a scatter graph of viral load in the first days of infection showing how variable it can be.
- matt
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Hi Scott
I was diagnosed at the end of August this year when i was in hospitalised with what I thought was a bad chest infection and turned out to be PCP, I had a HIV test 25 months previous which came back negative, so i can approximate when i was infected (May, June, July 2004). When my blood work came back my CD4 was 9 and my VL was off the scale at >500,000, the doc said they stopped counting, after 3 weeks of being bed ridden in hospital i was started on meds and after the 1st month my numbers were CD4 50 and VL 1496.
So the huge drop in VL which people seem to indicate happened to me, I've got to go back for the 2nd month on meds results soon. No sure what to expect but I'm fit and healthy again so not concerned.
Not sure what is meant by the acute stage, but my decline was very rapid (according to the docs)
Paul xx
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I was diagnosed in the acute/early stage. Not sure when acute changes to early. I had symptoms and was tested (previously tested negative several months before) which came back inconclusive. They did viral load tests and they were high (don't remember anymore but probably in the 200-300,000 range). My tcells were below 200. My doctor and I decided to go on meds immediately. I think I had 2 or 3 lab work prior to starting meds and the viral load did move around (but it quickly trended down to around 100,000). My doctor wasn't too concerned about the viral load, it was more the tcell counts that he was interested in, (since the viral load was highly variable at that stage of the infection), and at the time there was the belief that early treatment would allow my immune system to better cope with the virus after I stop treatment. Also the viral load test isn't extremely accurate. Meaning, they don't go in and count all the viral particles in your blood. They basically do something that gives a best estimate for how much is there, so any one particular test doesn't necessarilarly mean much (despite the spike, you very well could have had the same actual viral load as the previous time you took the test).
I've been off treatment for over a year now. My tcell counts were great when I was on meds (probably because I started early). But since stopping meds, they have quickly dropped. I don't think early treatment did me any good (physically). But I'm glad I decided to do it. It probably did help me to cope better with being HIV positive and without a doubt my tcell counts were great because I started early. Though I do feel the same with a tcell count of 300 as compared to my counts when they were almost a 1,000. So I'm not so sure the high counts mattered much.
Anyways, good luck to you and let us know how things go.
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Alberche (member of these forums) started treatment during acute infection. Maybe he could help you.
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Thanks for all the responses. Based on what I know today I think I will stick to my CD4 count for treatment decisions. There doesn't appear to be a quantifiable argument for early treatment when one's CD4's are still well above 200/350/500. Any benefit to early meds appears to be purely speculative. What little evidence there is doesn't seem to support the idea that early meds delay the inevitable - in the end you get to about the same point at about the same time except you spent more of those years on meds. That's my take on it anyway!
In any case I'm glad to be here amongst you.
Scott
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I was diagnosed during the acute stage of infection, six weeks after i contracted the virus in fact. My viral load was well above 500,000 but fortunately my cd4 count was still above 600. I was immediately put on medications after three months my viral load was undetectable, and it has remained so for the last three years, fortunately I've always been well about keeping myself healthy and my viral load is still undetectable and my cd4 count is above 1100, and i believe this is in no small part due to the rapid application of medications, which i believe curtailed any largescale immune system damage.
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This sudden prospect of meds has brought me back to these boards. I wasn't really expecting to be on meds anytime soon - I was thinking more in the 8-10 year range before CD4 levels dictated meds. Oh well.
Scott,
I was diagnosed most probably 5 months after infection with a VL of 350000 and about 350 CD4's... VL never went down. I was under phytotherapy (not HAART) for nearly 2 years with CD's slowly going down towards 200 as VL climbed steadily to 500000 and then shot up to 1 300000... this was time to start more potent meds.
Got started with 2 meds only and this has worked until now but has also brought lipo. I will never know if I should have gone for the whole cocktail straightaway. Now with lipo and resistance developing I am going to switch meds and get proper HAART therapy.
I also hoped for the 10 years thing...never happened :P
Hope this helps
Pat
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Hey numbat that's really cool for you! I've read a few theories about early treatment preventing immune system damage but I guess they haven't been able to study that effectively yet.
I'm curious, are you still taking meds??? A few studies about early treatment stopped meds after the virus became undetectable but levels rose within 2-3 years to previous levels and questioned whether there was any lomg-term benefit to starting/stopping early to get levels down.
My doctor is thinking of starting/stopping if my next test is still high but I'm leaning against that.
Scott
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Hiya Scott!
Yes, I strarted treatment just 3 months after being infected.
I had a risky situation in march this year, and 3 weeks after I felt very ill during 3 weeks, lost 9 kilograms, had fever, nausea, headache, pain in joints, I lost all my strengths to the point I couldnīt properly walk... My family doctor thought about a mononucleosis, but I suspected it was AIDS, so I decided by myself to make a PCR test. Blood sample was taken 31 days after the day I am sure I got the virus and result were 256.000 copies.
Then I went directly to the hospital and asked for an appointment with a specialist. I got it for june 2 (60 days after, and doctor repeated PCR test, and also done ELISA, Hepatitis B, C, Sifilis, Toxoplasma and so on. Got results 3 weeks after, by the end of june. Viral load went down to 65.000 (without meds) and CD4 were at 1.120 (very high indeed).
Almost 3 months had passed since I got infected and my doctor proposed to me to start immediately. And I agreed.
I started with Truvada + Sustiva. Everything was OK until the 3rd or 4th week, I started to feel pain in the joints and had a severe rash. Doctor stopped Sustiva and changed it by Atazanavir boosted with Ritonavir, keeping Truvada, and that's what I am taking now.
I got new labs in last september: Viral load undetectable (less than 50 copies) and CD4 pumped up to 1280. CD4/CD8 ratio that was of 0,9 at the moment of starting with meds was of 1,01.
Cholesterol, lipids and glucose are normal. I am not experiencing any kind of remarcable side effects, unless a little more slow digestion.
I am going to a gim, I sleep well and deep and I am taling care of what I eat.
At the moment, I am very happy.
A got a resistance test and my virus is being studied every 4 months in order to see its genotipic and phenotipic evolution.
In the future, I have two choices: after one year of tratment, stop and see what happens or, if I am not experiencing remarcable side effects and VL remains undetectable, keep going on on meds.
I have read that when you stop VL increases and CD4 go down and then tend to stabilise... well, I'll think about it when the moment of stopping arrives by mid of next year.
Now I am well and I am happy with my decision.
I have discovered, surprisingly, that there's very few people in our situation, and that a majority of doctors have even less information about what to do than we have...
Well, let's see what happens!
Hughs from Madrid, Spain :-)
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Hiya Numbat,
My situation is very similar to yours. After 3 months of treatment, started almost 3 months after infection, I am undetectable. My lower CD4 count was 1120 and now I am at 1280.
I lost 11 kilograms since acute infection syndrome until I started with meds, now I have regained 4 kilograms in 4 months. I feel good.
I think I will continue with meds, the idea of stop and wait and see does not seem good to me.
Hughs from Madrid, Spain.