Was my doctor negligent?
Nov 22, 2002
Two months ago my viral load was undetectable and my T4s were 350. Except for neuropathy in my legs and feet I felt great. Prior to September 2002 I had been on HIV/AIDS drugs for 12 years. My doctor asked me if I wanted to try a STI and I agreed. I went off my meds the first week of September and after a few days off meds I started to feel sick: Fatigue, general malaise oral thrush, worsening neuropathy. I saw my doctor every week after that and he tested for all sorts of things but not my viral load. After four weeks I had a vl test and it was 350,000 and my T4s were down to 100. Last week I started new meds (Kaletra, Vired and the new Videx) and I'm feeling really lousy. Was my doctor negligent in waiting four weeks to test my vl and then wait another seven days before starting a new treatment?
Response from Dr. Cohen
There is growing information about treatment interruptions. And we are still learning.
There is no standard "approved" time to recheck the numbers - sometime in the first month however is common to do and is what some studies use as the first time to check. Which doesn't mean we have to wait until week 4, but that it can be safe to do so. But some will have early rebounds in viral loads, and drops in the CD4 counts - and sometimes that can happen faster than week 4. One of the more common predictors of who may drop fast are those with a history of low CD4 counts - as this group appears to have a higher chance of having the counts respond in the way you describe. However - perhaps half of those with lower counts can have a small drop in CD4 counts when stopping - and be stable off meds for some time - so even this predictor isn't perfect. Sometimes the response is unpredictable.
It is not clear is why you did the interruption - what was it about your situation that led your clinician to suggest or even recommend one? Whenever we do discuss an interruption it is important, as it is when starting meds - to discuss possible risks as well as benefits - and when to call when things are not right. Certainly that kind of communication is key to make treatment work - including stops as well as starts. And even timing of restarts - I don't know what led to the one week added delay and that too would be helpful to understand. Perhaps getting the repeat VL and Cd4 results was thought to be important to understand the symptoms you had before restarting?
As for not feeling right at this point - it is hard to say what is going on there - the side effects of a burst of HIV can be the cause here - and it may take a while to calm HIV back down on this combo. However - some will have side effects from these meds - and I can't tell if this is a new combo for you or a restart of meds that you did tolerate in the past. That too can help sort out what is going on now.
So - there is nothing in what you describe that is "negligent" -- the word itself however has strong connotations that state however that you don't feel a confidence or a partnership in what was suggested nor a sense of a plan that includes you can call when things aren't going right. And that is worth addressing with your provider.
Hope that helps.
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