Advice on Starting HIV Treatment From People Who've Been There

Starting HIV meds -- or thinking about taking this step? We reached out to a group of those most in the know about the intricacies of starting treatment -- HIV-positive people who've made the decision to start themselves -- and asked: If you could go back in time to the moment before you started HIV treatment, what advice would you give yourself?

Kay D., Colorado; Diagnosed in 1992

Be open and communicate concerns and side effects with your doctor. If this combo isn't compatible with your body or lifestyle, work with your doctor to find the right one.

Lillibeth Gonzalez, New York City; Diagnosed in 1992

Seek help in maintaining a healthy lifestyle. Before starting HIV treatment, my T cells were 868 and I was in great shape, but I thought I was going to die so I started to hang out and drink, and I didn't keep a good health regimen. That was the most ignorant decision I ever made. Due to that choice, my T cells went down to zero. I got TB, neuropathy, wasting syndrome, and PCP [pneumocystis pneumonia] four times. I was in denial.

Bernard Jackson, Falls Church, Va.; Diagnosed in 1999

Understand the short-term and long-term side effects of the medications, and how best to cope with them in my everyday activities. I feel that this understanding of how to handle the side effects of the medications would help in my communication with my doctor.

fogcityjohn, San Francisco, Calif.; Diagnosed in 2004

The one piece of advice I'd give myself? Start earlier. With all the new research indicating the possible benefits of earlier initiation of antiretroviral therapy, I now wish I hadn't dithered so long.

Read fogcityjohn's story of starting HIV meds.

Brenda Chambers, Salt Lake City, Utah; Diagnosed in 2003

Make sure you're working with a provider who has experience with HIV and the side effects of the meds. It is important to know what you are getting yourself into because adherence is so very important. If you don't think you can live with a side effect such as vivid dreams from Sustiva (efavirenz, Stocrin), which is a component of a popular med called Atripla (efavirenz/tenofovir/FTC), then let your doctor know. Research what side effects come with each medication, but get some suggestions of first-line medications from either your doctor or a pharmacist. Only you know what you will allow and what would make you skip medications, which is NOT an option.

Maria T. Mejia, Miami, Fla.; Diagnosed in 1991

I've been HIV positive for 20 years; for the first 10 years I didn't take any HIV meds, and for the last 10 I've been on HIV medication. Not everyone should wait this long to get on meds, however. All bodies are different. After 10 years my CD4 count went down to a dangerous 39, and that's when I said "It's time."

Rusti Miller-Hill, New York City; Diagnosed in 1991

It's important to be honest with your doc about your lifestyle, whatever that may be, so that an informed choice regarding treatment options can be made.

Take your time in absorbing the information, so as to not become overwhelmed.

Find someone to share this journey with you. Another ear and set of eyes is always helpful (even if it is only for a moment).

Khafre Abif, Augusta, Ga.; Diagnosed in 1991

It wasn't until 1998 that I started my first medication regimen. Out of the gate and taking 21 pills a day. For me this involved seven pills in the morning as I prepared to get my son and me of the house for school and work; seven during the midday while serving as a manager in a public library and seven in the evening after picking my son up from school and attending any number of afterschool activities I had scheduled for him. ...

Philip D., San Francisco, Calif.; Diagnosed in 2007

Give yourself time for your body to adjust. The day you swallow your "little soldiers" for the first time, you may wonder if you'll ever feel the same again. You know what? You will feel even better but it might take some time. Give it six months (and drink more water).

Read Philip D.'s story of starting HIV meds.

Steven Berveling, Sydney, Australia; Diagnosed in 1996

I started HIV medication in May 1996, on the day that I was seroconverting. I was in hospital. So I never lived with HIV without the medications. But on that fateful day, the medical staff sought to delay medication "to give me a chance to get used to being HIV positive." I responded: "I'm used to it, now get me the meds."