POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: happy2008 on July 29, 2008, 06:31:45 pm
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BACKGROUND:I am a 48 y.o. male, and I have been infected since at least 1995 (13+ yrs). I tried treatment 3 times in the mid-90's, but had to stop all of them in less than one week due to various side effects. My doctor categorizes me as "treatment naive". The Dr. did some kind of analysis on my HIV and found resistance to 3 meds, all within the same class.
Since the mid-90's, I have purposefully not taken any HIV meds. I think that part of my reluctance was that I got the sense that the doctors didn't really know the effects of what they were prescribing. I am also kind of a organic/nature guy, and I wanted to give my body a chance to fight HIV on its own for as long as it could. The other part of my reluctance is that, in my mind, once I began taking the meds, I would "really" have HIV. It's denial, I am sure, and I am really good at it! ;)
From 1995 - 2001, my T-cells ranged from 800 to 500, definitely on a slow, gradual decline. My viral load was always <1000, or "statistically insignificant", to use my Dr's terminology..
From 2001 - 2008, my T-cells have been stable at just above 400, and my viral load has remained stable in the range of 1,000 - 3,000 (again, termed "insignifcant" by my MD.
I've had no opportunistic infections, although I have had staph outbreaks from time to time (and had them for a decade before I was infected as well).
DILEMMA: My Dr. has always respected my decision to remain off of treatment due to the large amount of unknown risks associated with HIV meds. We had an agreement that if my T-cells dipped below 350, we would begin treatment. My lab values have not changed, but every so often my Dr. gives me a scary bit of news that happened to someone somewhere, and I go through this agonizing reevaluation of when I should start treatment.
QUESTIONS: 1) What are your thoughts and experiences on someone with my health status beginning treatment now, vs. continuing to delay treatment?
2) My Dr often "hints" that HIV "might" be doing damage to "unkown" systems. How in the world am I supposed to use that information?
3) If delaying treatment carries risk (and I am sure there could be some), how do I weigh that against the definite risks/side effects of HIV meds?
Sorry for the long post...I know I am quite unsettled. I wanted to hear from folks who have gone down this path before me, so I would appreciate your comments.
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Happy,
Well first of all, don't be unsettled . With a CD4 count around 400 and a VL that low, you have the time you need to make the right decision for you.
The 350 cd4 treatment threshold has become the "standard" treatment trigger. While that exact number may provoke some debate, it is generally agreed now that you don't want to delay treatment for too long if your cd4's hang in that neighborhood and you certainly want to look at treatment if they drop below 350. My thoughts on your questions (for what they are worth):
1 and 3) I'm sure you have read a lot of posts (here and elsewhere) from those of us on treatment who are dealing with some various side effects to medication. The good news is, that as serious as some individual cases may be, antivirals today are generally well tolerated with minimal side effects. That doesn't mean there aren't any, just that there are plenty of potent drug combos available that are convenient and safe. There are a number of good reasons that you might decide to delay treatment. Fear of medication isn't one.
2) HIV replication certainly does do damage to many of the bodies immunologic and other systems. This is why the vast majority people with untreated HIV infection get sick With some potentially nasty things:
http://www.aidsmeds.com/articles/OIs_4898.shtml
How to use this info? That's where a constructive relationship with your doc helps. Ask questions, do your due diligence, then go with what you know......All the best! :)
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I have only been infected for a much shorter period of time - not quite 2 years since I tested positive. So this may not help much given where you are at now. I'm mostly responding because of the similiarities in your lab numbers and mine. Just like you, my tcells have been in the 500 - 800 range, and my VL always below 3000. My doctor says it's very low. I have had no OIs yet either, and my doctor has advised me to remain off meds, which I have done. But other than the labs, I have had various unexplained health problems, and my doc said I could go on treatment whenever I want if I prefer - but that's a step I have not taken.
Regarding your questions, what does your doctor say about it ?
I am not one, but here is what I would ask in your sohes :
1) It seems that you have done well for the past 13 years without treatment so far. Is anything else in your health changing, since your lab values are somewhat stable ? I would take a look at that in your decision to remain off meds. And I am sure your doc is too.
2) I sure would like to know if you find out the answer to that one ! That doesn't seem helpful at all.
3) Well, obviously you have been losing tcells in the long run. You had a peak of 800 tcells, and you have been around 400 for a while. Over 13 years that's an average loss of 30 tcells per year. Which is much much better than average, but it's not zero. And it could continue to fall over longer periods of time. That's the risk you probably incur, even if you are in denial about your HIV. If (big if) you keep progressing at the same rate, in another 13 years you will have no tcells, AIDS, and OIs . Of course, your doc won't let that happen if you are getting monitored frequently enough. But you still might end up starting at a lower count than you want if you have some sudden loss. Sometimes the CD4s don't go back up very fast or at all when you start at too low of a count. Everyone has a different response to the meds.
As one data point, my bf started meds march 2007 with a tcell count of 240. In the year that followed, he had counts (roughly, by memory) of 280, 350, 400, 200 (I sure remember that drop!), then 380 again the month after . I know that he has not topped 400, and his lowest count of 200 came while he was on the meds ... His VL has been undetectable the whole time while on meds, and he changed treatment once.
Personally, I am going to wait some more before I consider meds. Definitely if I get to 350 I will go on meds, as it is the official CDC guideline now. But if I have more health problems, I may decide to go on meds regardless of lab values too. Barring any specific issues, waiting for a count of 350 seems reasonable, as long as you get monitored frequently enough. I get tested about every 3 months.
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Atlq and Madbrain, your words of experience and encouragement mean a lot to me. Thanks.
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Hi Happy,
I've been poz since 2000 and started meds 2006 when my cd4 went to 350 vl up and down 12,000-120,000. Started on Sustiva and Truvada and have had great results. Your counts are really good especially your vl. Unless your having symptoms of not feeling well and your vl gets higher and tends to stay on that trend and your cd4 starts to go down I would not worry and would keep getting blood checked on a regular basis.(every 3 months is good) There really is no benefit to starting sooner if you are feeling well and your counts are looking just as good. Nobody really knows what the virus is actually doing during these quiet times. Too bad there wasn't some kind of radar that could be used to see what the virus is actually doing. I hear your anxiety about this I had the same. Hopefully you can remain doing well with your counts and feeling well. For me there would be not much more I could ask for!
Hang in there and always feel free to ask about anything here.
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Happy,
It's quite apparent that your decision to defer treatment is largely informed with your negative experiences with meds back in the day. However, despite the severe side effects possible from some currently prescribed meds, most people who start meds these days do so without suffering difficulties--you need to substitute that fact for the angst over potential nasty side effects.
As for your numbers, they tell us that HIV is continuing to damage your body while unchecked. With CD4s in the low 400s you can still be susceptible to opportunistic infections if the CD4s you have retained do not still have the memory of OI pathogens. Continuing to forego meds may give you some psychological feeling of victory, but it is letting the virus win, slowly as it may be taking its toll.
Best,
David
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OutOfDarkness: I appreciate your warm and thoughtful reply. I feel at times like I am caught between organically knowing how my body is doing, and various technologies that may or may not tell me different pieces of the puzzle. It is good to remember that I still have some time to learn about these topics.
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Howdy Happy,
Right now your numbers are OK and you shouldn't have problems with OIs.
Note I said shouldn't, because I have known some who did.
You said you tried meds three times in the mid 90s. What meds did you try?
I am curious because I started in the mid-90s as well. I started with Saquinavir, AZT and Epivir, but soon switched the Saquinavir to Crixivan.
I started when my CD4s dropped to about 440 and the viral load approached 50,000.
Your reticence to start meds may be grounded in your experience, but the bottom line here is there are many new meds today that don't have the severe side effects we experienced a dozen years ago.
As Redhotmusclebear mentioned, there is something to be said for maintaining a historic immune system that can fight off the nasties that come along.
But, at the same time, unless you are committed to taking the meds, it won't matter if they had no side effects at all, because the chances are you won't take them.
The answer to your question is you should start meds when you are ready to commit to taking them. You have to adhere to your regimen, whether it is one pill a day or 22.
Keep in mind denial won't keep the wolves at bay. So, should your numbers drop to the magic 350, or your viral load jump, you really should consider starting meds.
It is a personal decision only you can make.
HUGS,
Mark
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Aztecan,
Thank you for your kind words. I cannot remember the combos I was on in the 90's, but I do remember a few of the meds:
AZT
Reyetaz (turned my eyes bright flourescent yellow) :)
Some "V" drug(s) like Viread (non-stop diarrhea)
Thats all I remember....
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Happy,
One of the things you might want to do is have your doctor go over the results of your resistance tests with you and pin down your past ARV use. I think I am correct in saying that you couldn't have been on Reyataz in the 1990's (or Viread either?).... There are a lot of drugs now and it can be confusing, but having an accurate treatment history is important..... :)
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atlq: You were right! I was completely tweaked out on meth and did not remember having begun treatmen in 2001. My sponsor remembered, though. :) I guess I didn't have as accurate a picture as I thought I did. Thank you so much.