|RESULTS WHAT DO THEY MEAN - HELP!
Oct 20, 2006
Dr I am 38 living in England. Diagnosed Feb KS, weight loss, fevers,night sweats VL <100,000 CD4 136 March VL >100,000 CD4 226 Started Sustiva/Truvada after resistence testing. April VL 1600 CD4 330 June VL 300 CD4 300 Weight increased to normal, no sweats or fevers. August VL 200 CD4 240 Sept VL <50 CD4 337 October VL 150 CD4 370. Re-test of VL this week and awaiting result. I am so anxious about this result its unreal, I have not slept, I am bad tempered its pathetic. I feel I have failed somehow. I have always taken the meds on time, never missed a dose, don't do drugs eat well, don't have sex safe or otherwise. What do think is going on, it seems everyone manages to achieve <50, I manage it once in 7 month and it shoots back up again. My dr says if this next result shows the same number or more than a change of meds should be considered. Trouble is my meds give me few side effects and are easy to take. Is it that important to get <50 or is a VL of 150/200 acceptable or will it do me too much harm. After all my dr said a few years ago 150 would not have been detectable. I feel like I m going out of my mind about this one result, imagine if it happens regularly. Any advice/suggestions from yourself or others would be greatly appreciated. This feels like the longest 7 days of my life. Thank you.
Response from Dr. Sherer
While I understand your anxiousness, I think you need to prepare yourself for the long haul over many years, with many uncertainties, and keep your focus on the large picture as well as the difficult and sometimes vexing details.
And the large picture is that you have not failed in any way - you have had an excellent response, with a rise of over 200 CD4 cells from your nadir, and this is due in no large part to the excellent adherence that you cite. You have achieved considerable success.
You should be aware of how close you actually are to being below 50 copies - since a change in viral load is only significant from one test to the other if it is 3 fold greater or lesser than the previous value, a level of 150 copies in reality ranges from 50 copies to 450 copies.
Your doctor is correct that our observations suggest that the best outcome is to be consistently < 50 copies - this has been shown to have the lowest risk of subsequent resistance, though I point out that virologic failure and resistance CAN occur, even in someone who has achieved this level of <50 copies/ml over several months. Low level viremia in the range of 50-500 has been associated with a higher risk of virologic failure and resistance over time, but appears to be less than a threat than a viral load that is consistently rising, which is more often associated with the failure of a regimen and the development of resistance.
Was a resistance test done before you started ART? I presume so, and I presume that it showed wild type virus that was sensitive to all of the drugs in your current regimen. Unfortunately, we know that minority clones of less than 20% - and so not detected by our resistance tests - can harbor resistance mutations and subsequently cause virologic failure. I think this is less likely in your case, since your CD4 cell response has been excellent, and your viral suppression has been very good, though not perfect.
Finally, 40% of patients have 'blips' or low level viremia after a period of complete suppression. If they return to baseline, or if there is no continuous rise in viral load, they do not appear to be associated with greater risk of virologic failure and drug resistance. Your next viral load may return to <50.
So these are some reasons to be cautiously optimistic.
I would await the next test with some calm. And then let's consider the worst case scenario - the next viral load is 10,000, and a resistance test shows some resistance, eg to EFV and 3TC.
You and your doctor will then have the option of several reasonable second line drugs, eg lopinavir/r or atazanavir plus 2 new NRTIs, based on the genotype test. Having no current OI and high CD4 cells, your chance of a compete response with this regimen is excellent. Some of these options can be administered once daily, and all of them twice daily. They have different side effects, but they can be managed by most people, and only a minoriy have them at all.
If and when that regimen fails, there are yet other regimens, such as darunavir, that can be used. And the drug pipeline is robust, with several promising new drugs - such as an oral entry inhibitor (Miraviroc), a second generation NNRTI (etravirine or TMC-125), and an integrase inhibitor (MK 0518) that are currently or soon to be available in the US, and thereafter at some point in the UK.
You are likely to take many years for this journey.
When you are spending every waking minute worrying about a blood test, then the virus truly does have the upper hand, since your quality of life suffers deeply. I advise you to ask your doctor about all these questions, and to share these thoughts with him or her. You might benefit from some counseling about all of the anxieties associated with HIV, and this sense of failure and shame, which are a waste of time, and which can rob you of the real benefits that you have achieved to date with your excellent adherence, your doctor's good works, and the potency of your current regimen.
Remember, its not the only regimen, there are others that can and will work for you if and when the time comes. In the meantime - set asside the day when you see the doctor to haul all of your anxieties out of the bin and walk through them with your doctor. For the rest of the time, once every day, remember your illness and take your ART, and then the rest of the day is your vacation from it all. What good is all this extra time, if you're just worrying it away? Find a confidant or a counselor and let them help you separate the fairly simple (though often nerve racking) business of being a person living with HIV from the other priority - living your life as you want.
You might have had diabetes, but you don't, you have HIV. Your best bet is to turn around and face the worst fears, and address the shame and guilt. You didn't ask for this disease, and you don't 'deserve' it. You have a disease, but you are not defined by it. Go bowling, go dancing, go to the cinema, walk in Green Park with some friends, and let it go. Cultivate the skill of living, and forget the virus for a while.
And talk to your doctor about your options.
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