Cocktail Anyone? When to Start HIV Meds ... or Not

Frankie Ninja
Frankie Ninja

As many of you know, I have been HIV positive since May 2007. These last six years have been insane to say the least. They have been a period of introspection, challenges, education and growth.

One of the most common questions I am asked is about my HIV medication cocktail. Many of my friends, associates and acquaintances are HIV positive or have full-blown AIDS* and ask me about my experience.

I am often asked by newly diagnosed people one or more of the following questions ...

"Are you on meds?"
"What meds are you on?"
"When did you start your meds?"

And then they get to the crux of the matter ...

"Should I start my meds?"
"When or how soon?"
"Which one(s) are best for me?"

The answers to these questions and many more vary from person to person. They depend on that person's psychology, physiology, health and the advice of their HIV specialist, as well as the conscious decision by the individual about whether to begin or wait.

The answers are not to be taken lightly, and neither should the decisions, as both are life-changing events. Once you start your meds, it is not advisable to stop. EVER.

I started mine on August 11, 2008 at 11 p.m. I chose that date and time for several very good reasons (for me):

  1. It was time.
  2. T-cell count, or CD4 count, had dipped to 300 (100 away from full-blown AIDS*).
  3. My viral load was in the hundred-thousands. ("Viral load" is a measure of the severity of a viral infection, and can be calculated by estimating the amount of virus in an involved body fluid. [quoted from Wikipedia])
  4. I needed to be in a psychological place where I understood and accepted that from that day forward until my dying day, I would have to take a "cocktail" of pills ... every day and without fail.
  5. I wanted to remember exactly when I started my permanent regimen. What better day to remember than my birthday?
  6. Equally as important was the time of day I would take my pills. I chose 11 p.m. because I could then go to sleep; or when I came back home to San Francisco, the time difference would work out to 8 p.m. A good time for me to take my meds because by then, my day would begin to wind down anyway.

Different cocktails have different side effects and requirements. Some require you to eat at a certain time, others to take the medication a certain way or at a certain time of day or night. Most doctors recommend taking your meds within a time frame of +/- 90 minutes on either side of your regular time to medicate. This is because the virus mutates constantly. If you go off of your regular schedule, the virus can mutate and become resistant to the medication and render it ineffective, sometimes in as little as two days. Then you would have to switch cocktails, perhaps to something less comfortable for your body.

Some side effects from the medicine can be, but are not limited to: nausea, diarrhea, nightmares, dizzy spells and more. Many times, these side effects are temporary and begin to subside after a few weeks. However, for many they are permanent -- sometimes severe enough to require a change in cocktails.

As you can discern, going on the cocktail is not a decision that should be taken lightly. However, waiting until your immune system breaks down so that you can rebuild it may not be in your best interest either. IN ALL CASES, I WOULD CONSULT MY SPECIALIST BEFORE BEGINNING OR QUITTING MEDICATION.

The general consensus among HIV specialists in the U.S. is that the sooner you start HIV meds, the better. I am of this opinion. It is easier to maintain a healthy immune system than it is to rebuild one. Although rebuilding one's compromised immune system has become easier, it is by no means guaranteed. Nor will it be as strong as it once was. We have come a very long way in HIV/AIDS treatment in the U.S., but we have begun to forget that THERE IS STILL NO CURE!

Though people in America no longer die of AIDS in the numbers that we once saw in the 1980s, we are having an increasing number of "HIVers" aging prematurely. Many are coming down with infirmities usually reserved for the realm of the elderly. This is now cause for renewed emphasis on long-term effects of HIV and medications on the human body. We have come so far that, fortunately, the focus of the treatment has shifted from just saving our lives, to improving the quality of our lives -- often with great success. However, not everything is as good as it may seem.

In San Francisco, where I currently live, public health officials believe that people diagnosed with HIV should begin taking meds immediately. Waiting for signs that the immune system has started to suffer may be too late for some related diseases like cancer and dementia to be treated.

Thank you for allowing me a few minutes of your time to read my words. May they help you decide for yourself what is in your best interest. Remember that regardless of what you choose to do, ALWAYS consult your physician. No one knows how to treat you better than your own physician.

* Editor's note: "Full-blown AIDS," while not used as often nowadays (mainly because there's no such thing as "partial AIDS"), is a casual term for the stage at which a person has "progressed to AIDS," or has been given an "AIDS diagnosis." Read more about the what defines an AIDS diagnosis.

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