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My Doctor is stuck on sustiva
Jun 10, 2001

I'm a 40something yo male who has been HIV positve for about 5 years. Because I always appeared healthy, I never paid much attention to my numbers. Lately, however, I feel I need to as my cd4 has dropped down to 100. I still feel alright. My problem is this: my doctor is hell bent on sustiva. I work in construction in Colorado, many of my jobs require me to work on bridges and large structures, I tried sustiva once and there was no way I could work my job while taking this med. I took combivir with it and was extremely tired all the time, the sustiva made me feel "high", light headed and a general sense of being "hung over". Every patient I know who has the same doctor takes sustiva, it seems to be all he prescribes. There must be another combination out there that I can ask my doctor to prescribe, I was wondering if viramune would be a good alternative along with perhaps abacavir, or ddi or d4t. I have no know resistance to any anti-virals that I know of. Your input into this would be greatly appreciated, as my doctor is the only ID doc in this rural community for at least 100 miles or more. I really don't think he considers meds in relation to my job. Thank you, I would take your suggestion back to my doc and try to work with him.

R

Response from Dr. Cohen

Sure thing. Hope this answer helps you both.

Sustiva is among the more successful initial treatment options, especially when used with two nucleoside antivirals such as what you started on briefly. However, as you point out there are those for whom it may not be as attractive. Including someone for whom the side effects are intolerable or just too dangerous to risk. Now, it is fair to point out that this particular side effect you mention, of feeling dizzy the next day, often fades away in a few days, although it can take longer for some. Clearly for someone in your type of work, and your clear history with this side effect, you may not want to try again. Since it is a very successful med - and if you only took it a few days, and if there were a long weekend coming up, or a vacation, or just a few days off say around the 4th of July - perhaps this is a time to see if this medication can work into your schedule? It may be that you, like others, find that in a few days, that side effects fades away. Most do note this - although the speed of the fade away can vary.

Nevertheless, you may not want to try again - perhaps you don't have the time, or you tried and it didn't fade away, or if even you did try again, what to do if it doesn't fade rapidly enough for you?

There are many many options to initial therapy. Where Sustiva has distinguished itself as superior to other options is especially for those with a high initial viral load. And you don't mention what yours is. Assuming you did have a viral load over 100,000, then the number of attractive options with highest rates of success are fewer in number. The alternatives that maintain the success rates for those with a higher viral load include regimens that contain two nucleosides, most commonly Combivir or Zerit plus Epivir, with a "boosted" protease inhibitor. Now, a boosted PI is a recent concept and refer to a PI to which we add a low dose of ritonavir which increases the blood level of the active PI. The options include one which has the ritonavir already in the same capsule - Kaletra - or you can add ritonavir in a low dose to most any of the others including amprenavir, indinavir or saquinavir (except not with nelfinavir for which we lack any data about its success when ritonavir is added).

Finally nevirapine/Viramune - is a more controversial agent in this setting - controversial only in that the data for those with higher viral loads show success in some but not all studies. Similarly, the lower CD4 counts, like at or below 100 cells, is another area where the most potent combinations are needed - and the history for nevirapine on this issue is bit less uniform. Although some would use it here just because of its simplicity of dosing. The same can be said for two nucleosides plus abacavir/ziagen - where the data for those at higher viral loads is a little less secure.

Another way to handle a lower CD4 count and/or higher viral load is to go to a four drug option - a few years ago, this was more often done by taking two protease inhibitors instead of one, but today, starting on three nucleoside antivirals plus one other agent is another approach with excellent initial results. So for example you might try nevirapine with three nucleosides - this has recently become easier with the arrival of Trizivir - a tablet that has AZT, 3TC, and Ziagen all in the same tablet. Here, the concerns would be to have confidence that your provider can help distinguish between a side effect to the Ziagen versus the Nevirapine - as both can have fever/rash in the first two weeks, and it is important to know how to figure it out if this should happen to you.

Perhaps your viral load is not above 100 thousand - and that would open up even more of the options to you. And these are well described in the recent treatment guidelines. These can be accessed on the web - with both strongly preferred and acceptable alternatives listed in table form. This can be found readily on the website www.hivatis.org (unless it is dot com... I can't quite recall right now...).

Hope that helps - since your first regimen is among the more important decisions you'll make once you decide to start treatment - and with a CD4 count around 100, most everyone would agree that treatment can help.

Good luck.



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