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Editor's Note: The Road to Success

March/April 2012

Just like most journeys in life, the road to success in treating HIV is often paved with failure, false starts, and detours. Recently I decided to change my entire HIV medication regimen, even though I had been on the same successful regimen for over seven years. I had been thinking about it, and discussing it with my doctor, for several years before finally arriving at the decision to switch my meds.

I had been, and still am, on a unique combination of a boosted protease inhibitor, along with a non-nuke. I had developed resistance to all of the nukes years ago as a result of sequential monotherapy, replacing one failing medication with only one other new medication, something you would not do today. My doctor told me that he would never make the same treatment decisions now as he did then, but we just didn't know any better at the time. Plus, our options were limited to those medications that were then available.

I eventually settled in with a treatment regimen that worked, and worked well. It was a powerful combination -- I maintained an undetectable viral load and high CD4 count for seven years -- so needless to say, I had some trepidation about switching. You know the old saying, if it ain't broke, don't fix it.

But along with those great numbers came some other numbers that weren't so great -- namely, high LDL cholesterol (the bad kind), low HDL cholesterol (the good kind), high blood pressure (which is thankfully being controlled by medication), and more recently, high triglycerides. So now, a new medication is being added for that.

Of course, we can never be sure if all of those conditions are a direct result of the meds, some of them could be from the HIV, or just getting older. But what I haven't mentioned are the side effects that I had put up with for all those years. Diarrhea, GI upset, insomnia, fatigue. And that's just for starters. However, I learned to live with the side effects. I found ways to try to minimize them, and ultimately grew to accept the fact that it was the price I had to pay for staying alive.

So as others around me began switching to or starting on some of the newer medications that were more tolerable and much easier to take, I wondered to myself, should I change, too? I didn't want to switch simply for the sake of switching. And there was the possibility, however remote, that the virus could "break through" and come roaring back. Did I even want to take that chance?

Or did I want to stick with what worked, what I knew -- what was comfortable? I know myself well enough to know that my tendency is to stick with known, comfortable quantities, but I was also ready to improve my quality of life.

I knew one thing for sure, I felt very strongly about the need to preserve certain classes of drugs that I have never used, namely integrase inhibitors, and, to a lesser extent, entry inhibitors. I realize that I am extremely fortunate to even have this option, as some of my friends are out of options and don't have that luxury.

So my strategy was first, I would continue to preserve those drug classes for future use, if and when they are needed. Next, based on results from past resistance tests and my treatment history, I would switch out my current boosted protease inhibitor for one that was more tolerable, that I could take once a day instead of twice, and which required less Norvir for boosting. Lastly, if I remained undetectable after the first switch, I would then switch out the older non-nuke for the newer one, which would hopefully result in fewer side effects.

Well, I'm happy to say that my switch was a complete success -- at least, so far. And the best thing is? I am sleeping better now than I have for years.

What's the moral of this story, you ask? I think one of the most interesting and telling points of my own personal journey is that, as someone who follows treatment developments and research more closely than most people would care to, it still took me years to finally decide to switch. I put up with intolerable side effects, partly out of fear, but mostly because I had gotten, well, comfortable. In this case, I learned that sometimes choosing to go beyond my "comfort zone" is a good thing and I'm glad I did.

Everyone's story is different, and what works for one person may not work for another. You and your body are unique. So are your treatment choices and decisions. I'm not advocating that if you have side effects or other issues with your current regimen that you should definitely change your treatment. But I encourage you to talk to your doctor, do your homework (by reading this HIV Drug Guide!), and think about what you want most out of life, and especially out of your treatment. Make a plan, and pave your own "yellow brick road" to success with wise, informed decisions about your own health care and treatment. And remember that sometimes we have to step out of our comfort zones to realize our, and our meds', fullest potential.

Take care of yourself, and each other.

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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
See Also
More Personal Accounts Concerning HIV Treatment

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