April 22, 2013
In the current era of HIV treatment that's both effective and tolerable, people's stories of starting HIV meds have changed considerably. HIV treatment may come with fewer side effects and the assurance that, if all else goes well, those meds will be a person's companion for a long, full life. But the treatment cascade reminds us that, in the United States, only a third of people living with HIV have been prescribed HIV meds.
One thing is certain: Whether you took your first fistful of pills in the late 1980s or began last week with one of several single-pill regimens, starting HIV meds is a life-changing event. Many of our bloggers and community members have told their stories of starting treatment; here's what some of them had to say about it.
Pat Kelly, Orangeburg, S.C.; Diagnosed in 1985
For many, many years, they tried to get me into treatment, to take medication. Because I watched what AZT (Retrovir, zidovudine) did to my brother, I was adamant about not taking it. … Just being there, taking care of him, I was in the mindset that they were using people as guinea pigs to test the medicine -- they really didn't know if it would work or not. And then when the cocktails came out, I said, "OK, more guinea pig-ism." But then in 1998, when I got the diagnosis of AIDS, it sort of really hit that maybe now I was finally going to die. And if I lived all this time without the medicine, maybe if I take it, I'll live longer. ...
The doctors were concerned and they talked to me. They told me, "Well, you know with 98 T cells, you can get this; you can get that. And being here in the prison, where you are really open to a lot of things, we really can't protect you." And so I said, "I want to live for my grandkids." I had missed the opportunity with my own kids. So, maybe for my grandkids I'll be there a little longer.
Ed Viera, New York City; Diagnosed in 1987
I remember telling myself, “OK, it’s time to go get treatment. Just because your friends died doesn’t mean you have to. Let’s go and start treatment.”
In the beginning [in 1998], they had me on Crixivan (indinavir) and it was scary for me. It was so toxic and back then you had to take it on an empty stomach. At that time the treatment was just worse than the diagnosis. I couldn’t hold food down with Crixivan. I lost a lot of weight. … I looked like a crackhead.
I stayed off treatment for a year and a half and then I decided to go back. Every time I heard about new medications coming on the market, that were easier to tolerate, I got more tempted to start back up again. So in 2000, I started taking treatment again.
Pastor Andrena Ingram, Philadelphia; Diagnosed in 1988
Now, I have been on medication since I was diagnosed 24 years ago. I like many other "old heads" started off with AZT (Retrovir, zidovudine). Disastrous!!! I can visualize it like it was yesterday. Taking the pill and then going around the corner to the supermarket to pick up some items. In the middle of the aisle, I became disoriented and so, so nauseous! I couldn't finish shopping. I had to go back home. ...
What I began doing after the AZT, and as I was going to begin what would become known as "the cocktail," I began the practice of "talking to my body," telling it and myself that we were going to begin this new regimen and we were going to do it as painlessly as possible. We were going to anticipate a few light side effects as we acclimated ourselves to the new drug, and then we were just going to keep it movin'!
And for the majority of my treatment, it has worked well. I have tolerated most of the meds wonderfully!
Efrain Carrasquillo, Bronx; Diagnosed in 1990
I started taking medications back in 1990, actually -- quickly after I was diagnosed. It was AZT (Retrovir, zidovudine) with maybe Epivir (lamivudine, 3TC) or ddI (didanosine, Videx) -- something like that -- it was two meds I was taking. I started with AZT and then they added that extra medication. I didn't know much about HIV or AIDS back then; what I did know was that people were dying … I started taking meds because I truly wanted to live as long as I can. I was 25 years old when I found out.
Lillibeth G., New York City; Diagnosed in 1992
My doctor started giving me many different meds until I found one, or five, that worked. When I started taking medications I did not adhere to my dose (another stupid choice ... it's difficult since you're not accustomed to taking so many pills daily). I became "MDR," which stands for multiple-drug resistance. It was very difficult; I was angry at myself for not adhering to the medication. I had to wait for a clinical trial that fit my criteria in order to participate (that experience was a horror, since you feel like you're running out of time).
Robert Breining, Philadelphia; Diagnosed in 2001
I looked at starting meds as my chance for change. So I started taking Atripla (efavirenz/tenofovir/FTC). It was a single pill once a day. Who could argue with that? The doctor informed me that there was a possibility of some side effects and that some are normal. He then gave me a prescription to get filled, and out the door I went to embark on this new adventure.
I remember coming home anticipating the worst in regards to side effects, but also looking forward to the vivid dreams that Sustiva (efavirenz, Stocrin) in Atripla can cause. Well, after a few days of taking Atripla I noticed a rash appearing.
Fogcityjohn, San Francisco; Diagnosed in 2004
I tend to be somewhat indecisive by nature. When making any kind of important decision, I try my best to gather all of the relevant facts so that the final decision I make will be a well-informed one. … As a lawyer, I can usually see -- and argue -- all sides of an issue. In my work life, this isn't a bad thing. In fact, it's a necessary skill. ...
Given my personality and professional background, it probably won't surprise you that I had a very tough time deciding whether or not I should start antiretroviral medication.
Tree Alexander, Brooklyn; Diagnosed in 2006
I started taking medication a couple months after I was diagnosed. At that time people didn't start medication until their CD4 count was below 300. And at that time mine was around 400-something. The people I'd seen that were really, really sick and didn't know if they were going to make it through the week, once they started taking medication then they started to get better, and I saw that, and I wanted that.
Ed Perlmutter, Boston; Diagnosed in 2006
Those were stressful days for sure -- severe anxiety, depression and physical illness make for bad company. But the nurses and physicians at the infectious disease clinic treated me with respect and exhibited patience and wisdom every step of the way. We had begun to forge a relationship built on truth and trust. I learned that I would be on the Reyataz (atazanavir), Norvir (ritonavir) and either Truvada (tenofovir/FTC) or Epzicom (abacavir/3TC, Kivexa) arm of the study, and in my infinite wisdom I thought it would be a good idea to start treatment during the week I had planned a September vacation at my friend's house in Wellfleet on Cape Cod; quiet times in a peaceful place, no distractions or responsibilities except taking care of myself by commencing my treatment. The clinical team thought my plan acceptable provided I check in with them on a daily basis. Within six hours of taking my first dose, however, I started to feel ill and by the next morning I had broken out with high fever, tremendous chills and extreme nausea.
Frankie Ninja, San Francisco; Diagnosed in 2007
I started mine on August 11, 2008, at 11 p.m. I chose that date and time for several very good reasons (for me):
It was time.
T-cell count, or CD4 count, had dipped to 300 (100 away from an AIDS diagnosis).
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])
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.
I wanted to remember exactly when I started my permanent regimen. What better day to remember than my birthday?
Philip D., San Francisco; Diagnosed in 2007
At the time, I called it "the first day of the rest of my life." My medical chart refers to it as the day I started anti-retroviral therapy. Either way, it's an anniversary I will certainly never forget. ... The morning of 3/25/08 began with some gentle yoga, a hot shower and a substantial breakfast. I sat alone a while with those colorful looking, life changing pills. I whispered a short prayer, "God help me" and swallowed them with a big glass of milk. I looked deep into the mirror and wondered if I would ever feel the same again. I wanted to cry but the clock on the wall said it was time to face the world, and so I did.
In the months that followed I have to admit, I did better than I expected. I ate lots of fiber, fruits, veggies and lean protein, took supplements, exercised regularly and started keeping a food journal. (I noticed there was a definite correlation between what I ate and how I felt). Physically I was doing OK, but emotionally, I was a mess.
If you thought the answer to the question in this headline was "No," have we got news for you! Don't let ancient medical reports and ignorance be your guides. Read on to learn more.