The Mental Challenge of Taking My First HIV Med
Part of the Series My First Pill
In February 2014, I was diagnosed with HIV after being hospitalized with PCP (pneumocystis pneumonia). My diagnosis was a complete shock to me, and I knew I was going to have to take medication from there on out. I was sent to a clinic where a doctor prescribed me Isentress (raltegravir) and Truvada (tenofovir/FTC) to treat the HIV, and Bactrim (co-trimoxazole) to prevent PCP. When I began this regimen, I kept thinking, "What are these drugs going to do to my body?" and "Do I really want to take prescription drugs the rest of my life?"
For me, my first pills were psychologically challenging. I did not believe that these pills would save me, but that they would damage me. This is primarily due to the fact that I am somewhat against taking prescription drugs when at all possible. I am a person who believes in the power of nature to heal us, and that food is medicine. Also, I kept reading about how these pills could potentially damage my liver or kidney function. Each day was a battle for me to swallow those pills.
As it turned out, the Isentress and Truvada regimen was not working for me. My HIV viral load was continuing to increase, and my CD4 count continued to decrease to dangerous numbers. My doctor had not run resistance tests on me when I first started seeing her to see what my body would respond to. Also, I was taken off the Bactrim due to it making my skin itch to the point that I developed minor rashes from scratching. My doctor decided to run the tests and I discontinued taking the medications. I waited for over a month for the results and went without treatment for a long time.
Once the results came back, she told me she wanted to start me on Edurant (rilpivirine), Retrovir (zidovudine, AZT), Norvir (ritonavir), Truvada, Prezista (darunavir) and Dapsone. How could she want to prescribe so many potent drugs for me? I was in shock, and filled with fear of what all of those medications would do to my body. I literally thought they would destroy me, and she discouraged me from taking any supplements.
At that point, I sought a second opinion as I had lost most of my confidence in my doctor, and did not believe it was necessary for me to take so many medications. The new doctor I saw ran his own tests and concluded that I would be fine to just take Prezista, Norvir and Truvada to treat the HIV, and Dapsone to replace Bactrim. It also turned out that I was resistant to Edurant, and my former doctor had just prescribed it to me. Needless to say, I was thrilled that I would not have to take as many pills as my former doctor had prescribed. I have been on these medications since August. Since then, the pills have worked as my viral load has decreased quickly and my CD4 count has increased as well. Unfortunately, I have periodically experienced loose stool since starting them, but taking a probiotic has helped to counteract that.
Also, the psychological challenges have continued for me. I loathe the pills I take every day, and I fear the long-term damage they may be doing to my body. This mindset may seem odd, since the pills are designed to tame the virus and enable me to live a longer, healthier life, but I cannot help but fear them. I have tried everything I can to care for my body since starting my HIV regimen(s), going as far as taking multiple supplements including N-acetylcysteine (NAC), coenzyme Q10 (CoQ10), elderberry, selenium, black seed, and up to 15,000 mg of vitamin C a day. I have done all of this to help support my body's healing process, but I recently found out that my viral load has not decreased in the last month, which put me and my doctor on alert. I now wonder if I have done something I shouldn't have, and since I have already taken a regimen of medications that did not work for me, I stress myself wondering if my current regimen is going to continue to do the trick.
All I can do for now is hope that my current pills have not stopped working and that I am going to be all right. Regardless of my personal feelings about the pills, I am truly grateful to the men and women who have fought and died to ensure that people like me have pills to help them live healthy lives. Not a day goes by that I don't think of all the people who have succumbed to AIDS due to not having any treatment for it. I must stop beating myself up about having to take these pills and look at the good they do. I hope to one day be fortunate enough to only have to take one pill a day, or to live long enough to see the actual cure for this virus.
What was your first pill? Whether it was AZT or Atripla, we want you to tell your story! Write out your story (between 200 and 1,000 words, please!) or film a YouTube video, and email it to firstname.lastname@example.org. We'll be posting readers' My First Pill stories here in our Resource Center on Starting HIV Treatment.