POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: madbrain on February 20, 2008, 09:02:15 pm
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I have read so many conflicting studies about whether it's good to start meds early or not, I must admit, it makes me wonder a lot. I am not on meds right now. I experience a lot of fatigue on-and-off, that I'm not sure is HIV-related, and neither is my doc. My numbers are still good CD4 at 553, 32%, 1600 VL . Did anyone start HAART with numbers like these - almost normal CD4, and low VL ?
I know the meds have a lot of side effects. And there is risk of long-term toxicity. On the other hand a lot of studies show in the long run your CD4 will never go back to normal if you start the HAART late. And some studies even say the side effects are less likely when starting early (!). But the studies don't say that much about how the patients felt. If you made the choice to start early, I would like to hear from you . How long ago was it ? Do you regret the decision ? Or do you think it was the right one ?
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I started meds when my doctor started to notice a downwards trend. Unfortunately it wasn't very long after infection for me. Less than a year. I started at around 700 I believe from my first couple labs and slowly dwindled down to I think it was the high 300s when I started. I think my percentage was around 18. My viral load was pretty astronomical though.
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I've never been sure. I started meds in 2003 when my CD4's were at about 300 and something. I stopped at the end of 2004 when my numbers were in the high 700s.
I didn't start again until I had 15 CD4 cells. Waiting until they got that low was probably a mistake. Although I didn't really wait. One day I had 400+ CD cells the next day I had almost none.
Your mileage may vary.
Heh.
MtD
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One day I had 400+ CD cells the next day I had almost none.
Heh.
MtD
If anyone believes that I have a picture of Bigfoot that I photosh- er, took to sell you. :]
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Well it seemed that way. :P
In June I had 400 or so CD4 cells. In September I had 115. In October I had 15.
How time flies. :)
MtD
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Matty,
Well it seemed that way. :P
In June I had 400 or so CD4 cells. In September I had 115. In October I had 15.
How time flies. :)
MtD
Was your VL pretty high when your CD4s were going away ? I'm wondering if it ever makes sense to start meds with a low VL since their main purpose is to reduce the VL .
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Viral load was through the roof dear. It was as high as the current tests used in Australia could measure. 10^6 or some such.
MtD
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Mad,
I have been wondering the same questions that you are asking. I was diagnosed in December this last year, so only been poz for 2 months now. I have come across some articles, so of them on here. I have a posting under the I just tested poz (actually I have two). Please read those, it has helped me. I think I am going to start meds at my next appointment which is next week. My cd4 count is 694 and viral load is 8100. Good luck to you, I know it is scary. R
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Hi,
Mad,
I have been wondering the same questions that you are asking. I was diagnosed in December this last year, so only been poz for 2 months now. I have come across some articles, so of them on here. I have a posting under the I just tested poz (actually I have two). Please read those, it has helped me. I think I am going to start meds at my next appointment which is next week. My cd4 count is 694 and viral load is 8100. Good luck to you, I know it is scary. R
I will check out your posts. Do you know when you were infected ? When was your last neg test before you tested poz ?
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Hey Mad,
I started meds with CD4s of 440 something back in 1996.
Still on meds, my last CD4 was 1,063 from a draw done on Monday. My viral load has been undetectable since June 1996. I think. Without looking it was either June or July of 1996, not that it really matters.
What can I say, the meds work.
HUGS,
Mark
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Mad, been on meds since about post 1991. I really don't remember my CD4. My last combo was Sustiva/Trizivir. I grew resistant to the Sustiva, however. My last CD4 was 300, but the viral load was 214,000. ID switched out to Kaletra (2 twice daily)/Trizivir. I'll see in about 3 weeks how things are.
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aztecan,
Hey Mad,
I started meds with CD4s of 440 something back in 1996.
Still on meds, my last CD4 was 1,063 from a draw done on Monday. My viral load has been undetectable since June 1996. I think. Without looking it was either June or July of 1996, not that it really matters.
What can I say, the meds work.
HUGS,
Mark
Thanks. Do you know what your VL was when you started ? And how long were you diagnosed and infected before starting ?
So far, nearly everyone who responded here and in PM seems to have had a fairly high VL before starting meds... Except for those who started meds before they had VL tests.
Did anyone start meds with low VL , say < 10,000 ?
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Hi Mad~
I was diagnosed in Dec. '93 with a CD4 count right around 1000. My docs attitude was "wait for it to drop and then we'll put you on AZT." I started meds about 1-1/2 years later when my CD4 fell below 400. For some reason, that was the magic number I had to fall to, according to my doc. I had a CD4 of 396 when I started meds. They didn't do VL testing on me until a years later.
Still kickin'! :D
~ Cindy
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Hey Mad,
I remember my first viral load was done in July 1995. They weren't considered standard of care yet, as far as I know, but I had an aggressive doc.
At the time, my viral load was 12,000 or so. I started meds the following March and, if memory serves, the viral load was somewhere near 50,000.
I tested positive 11 years before I started meds - in 1985. My first doc said she believed I was infected in late spring of 1980 because of some medical issues I experienced at the time.
So, I'm going on either 23 or 28 years positive.
HUGS,
Mark
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Hi
I strongly believe that HAART should be started at least between 500-600 CD4, when the immune system is still working good.
I got the prescription for the meds. I will start HAART as soon as I feel the time has come (still hesitating cause of the genotype).
But all the studies are converging to say the sooner is the better.
Especially to minimize the risk to develop a OIs or an non-OIs and restore immunce fiunctions.
HAART give us the following choice:
either it damage our body, or the HIV will.
So you have the choice which one you want to do it.
Personally, I prefer damage it with well known toxic substances than a virus.
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Hi
HAART give us the following choice:
either it damage our body, or the HIV will.
So you have the choice which one you want to do it.
Personally, I prefer damage it with well known toxic substances than a virus.
To the point , but to the newest recommendations HAART should start at approximately 350 CD4 count. On the other hand that number is rising due to a less toxic drugs nowadays.
My laic opinion is to start , if your doc allow you so, at your present CD4 number........~ 500 , so you can preserve both your naive and memory T cells.
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Unfortunately, the memory cells are almost all killed very early, just after the infection
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I didn't start meds till PCP snuck up and grabbed me. I had two T-cells and a low viral load of 450 and sick as a dog. I spent two months in the hospital. Now four years later I have 90 Tcells, 8%, undetectable. I also have fatigue and problems one after the other. I would suggest going on meds early. I probably would be doing a lot better if I had.
Good Luck
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Mad,
I tested neg in July/Aug. 07 and then got sick around the first of December of 07. My first western block came back inconclusive and the second one done a few weeks later came back poz. so I just seroconverted a few months ago.
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I didn't start meds till PCP snuck up and grabbed me. I had two T-cells and a low viral load of 450 and sick as a dog. I spent two months in the hospital. Now four years later I have 90 Tcells, 8%, undetectable. I also have fatigue and problems one after the other. I would suggest going on meds early. I probably would be doing a lot better if I had.
Good Luck
Sorry to hear. PCP, 2 tcells but only 450 VL seems pretty unique. Was your VL always this low before the PCP ? And were your tcells good too until then ?
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Madbrain, solerelaxer probably meant 450,000. At least that's my guess. Feel free to correct me, sole. Just seems odd that the CD4 count being what it was, plus having PCP, that a viral load would be 450.
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Bettytacy,
Madbrain, solerelaxer probably meant 450,000. At least that's my guess. Feel free to correct me, sole. Just seems odd that the CD4 count being what it was, plus having PCP, that a viral load would be 450.
Yes, it seems odd. But he said he had a low VL. 450 is a low VL. 450,000 would have to be considered a high VL.
I would prefer if solerelaxer provided a clarification.
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I'd also wonder how regular/frequent his medical appointments with his doctor seeing as how he went to that low of a cd4 count so suddenly.
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aztecan
you sound like one of those people who maybe didn't even need meds, you seem to be doing as most people would like
Can I ask what meds you have take and are taking now ?
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Did you start meds early, while still having good labs ?
Nope. I unfortunately waited and didn't start meds until I had my aids diagnoses. T-cells were at 16 viral load at 500,000 plus and a percentage at 3 to 4 %.. I would never suggest anyone do this.
Ray
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aztecan
you sound like one of those people who maybe didn't even need meds, you seem to be doing as most people would like
Can I ask what meds you have take and are taking now ?
Why sure. By today's standards, I started before I needed them. But, what was important at the time was that my numbers were steadily dropping.
While my CD4s had ranged from 600 to 900 from the time I started seeing a doctor (1992), they had started a downward spiral.
It is important to remember, it isn't just one set of numbers to watch out for, but patterns that show up over a period of time during regular monitoring and testing.
I started out in March 1996 on AZT, 3TC (Epivir), and Saquinavir (the original formulation which was pretty nasty stuff.)
I couldn't handle the Saquinavir and switched to Crixivan, which I did pretty well with from May 1996 until May 2007, when I switched to Sustiva.
Sustiva didn't play well with me. I dropped it after two months and started on Reyataz with a Norvir boost.
That went for about three months, at which time I switched to Lexiva with a Norvir boost.
I have acid issues and have to take a proton pump inhibitor to cut down on stomach acid. That is not allowed with Reyataz, hence the switch. But I liked Reyataz as an HIV med.
I am still on Lexiva/Norvir with Combivir, all of which are working well and aren't causing me any problems at this time. I've been on Combivir or its equivalent since March of 96.
I do have some lipo issues and some slight liver complications, but all things considered, I am pretty well off and grateful to still be here.
HUGS,
Mark