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To start or not to start, that is the question
Sep 16, 1999

I studied the responses to as many of the questions that referred to the time a person should start the meds. I have tried to understand which med combinations might be the best. Hitting hard or drug sparing? Well, if the HIV doesn't kill me first I will probably get a brain tumor trying to figure it all out, and since my question is one of those that is probably too specific to be answered, I'll get no closer to resolving my dilemma. We'll try all the same. I am an American living in Italy and have the fortune of being covered by a National health plan, but the misfortune to be in a country that doesn't necessarily have the means to distribute information openly and accessibly to the public. We may not even have some of these drugs availible, even though Italy seems to get them before other European countries. How does one get a second opinion if all the doctors around you use the same "textbook". I thus decided to defer the question to you, knowing that it probably has been answered somewhere in this forum. When do I start and with what? The opinion of my doctor here is to use only two drugs and lower the count. If need be, then add a third. The two drugs were the traditional combos. What would you do if: Your VL fluctuated from 19,000 to 32,000, T4s ranged from 384 (lowest) to a recent constant 650. You have been positive for 15 years and no health problems and generally high tolerance for drugs. You are a "yikes take a pill twice a day,I'll never be able to do that" type person and have a schedule that never is constant (I don't work in one place, and I am rarely at home.) I am under weight but always have been. I suffer from Reoccurring Aphthous Ulcers (but always have since I was 12yrs, old along with herpes) but recently have been showing signs of leukoplakia. After reading "Low viral loads, high t count, when start meds?" I don't know what side of the fence I tend to fall - put if off, or get on with it. We do a load count every three months. It is for the most part constant in all these years. Would you start and with what? Thanks.

Response from Dr. Cohen

Well, that is alot to work with. Let's see what I can add.

Since you sound uncertain about your ability to meet the demands of pill taking - even a pill twice a day sounds daunting - why not first try it out - with something other than HIV meds? Like a vitamin. Or two. Or even an herbal supplement of your choice. And see what it is like to have to live with need to take a pill or two twice a day. And if you miss a dose - how that happened, and what you can do to minimize the chance of that happening - and see if you can do something that improves the odds of getting it 100% right. You might even get a bottle with 60 capsules - take it one twice a day - and see how many are left (if any) in thirty days.

This may be the key to your next step. Your numbers suggest you are on the edge of where many would suggest starting. But you do have some time. And that time could be spent learning this new skill of pill taking - with something on which the consequences of missing doses is less dramatic than HIV resistance. And if you miss more than a few doses in a month (even missing as little as one dose a week might matter) - you might want to work on what it takes to get this part as good as it can be before choosing which pills to take.

Which pills?? As you have read - there are several combinations that are only a few pills (from 1 to 3) twice a day. We are even working on combinations that are just once a day - though for now these are still less proven than twice a day combos. As for starting with two drugs only (two nucleosides I assume?) and adding a third drug later - that might work - but in general two nucleosides won't keep a viral load of 30,000 suppressed for very long - and then you risk adding a third to a combination that is no longer working so well - and then that med may not work as well either since we have learned that adding a single drug to a "failing regimen" doesn't work as well as just starting with a more potent opening move... And there are several potent three drug options that are pretty simple and minimal in the pill burden department. So that strategy is no longer recommended in the US as an opening move. (Now - there are some two drug options that are more potent that just two nucleosides - like two protease inhibitors, or one nonnuke and one PI, or abacavir and a PI, or even d4T/ddI with hydroxyurea - I am not sure I know exactly what your MD is proposing...)

So - if you did the pill taking experiment - and found all 60 were gone on day 30 - which combo should you pick? You just need to be clear what issues would make it harder or easier for you. Does the number of capsules you take matter to YOU? Does the need to take them with food matter - or not? Are there certain side effects that YOU worry about more than others? The answer to these would help narrow down the options. These days - most of the opening combinations with impressive viral load suppression use two nucleosides and either a non-nuke (often Viramune or Sustiva are chosen here in the US), or a PI (and we have five to choose from). And there is a third approach of three nukes - using abacavir as the third drug. We don't know the best combo. Really. If we knew that I would have told you in the first sentence of this answer. There are pros and cons to each choice. And your reaction to whatever you pick is among the pieces that is unpredictable - what is well tolerated by one is ghastly unpleasant to another. So that is why it is great we have choices - since not only can we not say what is best overall - we can't predict the best thing for you. We just pick from those with the best success - and see what happens.

In fact, probably the only thing we can safely predict in life is that the best pasta is to be found in some small cafe somewhere in Italy...

Good luck. CC



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