Factor #1: Side Effects
Diarrhea is one of the common side effects of HIV meds that one needs to accept may occur. While it's by no means a guarantee that you'll get it yourself, I don't know anyone taking HIV meds who doesn't, on occasion, have an accident when they can't get to a bathroom. It challenges one's dignity, but most people find they can adapt by taking diarrhea medications and following a routine that includes carrying extra underwear. (There's even an app for that: several bathroom-finder apps have proven very useful to clients and friends!).
Rashes, headaches, and nausea can also occur, often when starting a new drug. (Click here to read an article about managing these and other short-term side effects of starting HIV treatment.)
In addition, potential long-term effects of HIV medications are now emerging, which may include liver, cardiac and metabolic problems, as well as diabetes, high cholesterol/triglycerides and osteoporosis. Unfortunately, we just don't know what the long-term impact is of these drugs. But we do know what the long-term impact is of not taking HIV meds at all.
Despite these side effects, most people choose to begin HIV meds and work with their doctor to closely monitor their impact, not just on HIV but on other physiological systems as well.
Factor #2: Substance Use
I work with many patients whose substance abuse has particularly devastating consequences on their medication adherence. This is especially true for methamphetamine. Most meth users take the drug over several days, during which genuine commitments (like using condoms or taking one's HIV meds) are abandoned. Some people make heroic, but usually unsuccessful, efforts to take their HIV meds (setting mobile phone alarms, asking friends to prompt them). Others just give up while partying.
Recreational drugs can also interact with HIV meds in a variety of ways, which may cause a dangerous increase in blood levels (this can lead to an overdose of the recreational drug) or the rapid metabolism of the antiviral, creating an opportunity for mutations that lead to resistance.
Anyone starting HIV meds needs to seriously consider their recreational drug use and its potential impact on their ability to maintain their medication regimen. HIV meds don't mix well with recreational drugs.
Factor #3: Drug Interactions
Many HIV medications interact with other prescribed medications and nutritional supplements. It's important for anyone starting meds to understand how they work and their potential interactions. For example, many people use St. John's Wort, an over-the-counter supplement, to treat symptoms of depression. Simultaneous use of this supplement with Norvir (ritonavir) can cause dangerous interactions.
Similarly, many HIV drugs can cause unexpected increases or decreases in blood levels of other medications, so speaking frankly with your physician about everything you take, including supplements, is essential.
Factor #4: Your Mental Health
HIV medications, even if taken only once a day, require consistency and stability. Mood disorders that cause fluctuations in motivation or unpredictable behavior can be a great concern. I have had clients with Bipolar Disorder who stopped taking their mood stabilizers during manic phases and soon stopped taking their HIV medications as well.
Depression can be equally debilitating if one loses interest in self-care, including HIV therapy. Others find that taking HIV medications is a disturbing daily reminder of their status. This can be greatly alleviated by identifying and expressing the strong feelings that emerge after an HIV diagnosis and trying to look at taking HIV medications not as a burden, but as one more empowering activity we do to suppress the virus. Managing mental health is a critical component of managing HIV.
Factor #5: A Strong Support System
Like Gwen, anyone taking HIV medications needs to maintain a strong and supportive network of friends, family and professionals. A variety of issues can arise when one might need help, such as experiencing strong physical side effects, needing moral support when things seem overwhelming, or finding assistance accessing the medications or making copayments. Physical health and stigma sometimes isolate people living with HIV, yet no one can manage it by themselves. A robust support system is essential.
Factor #6: Personal Empowerment
Starting HIV medications, like the initial diagnosis, can be traumatic. Most people can't help but view it as one more step toward the inevitable progression of the virus. It's not unusual to catastrophize, minimize, or even deny what's happening. I encourage my clients to process these feelings, network with others having the same experience, and find their way toward a personal peace with the virus, a place in which they are empowered to remain actively engaged in maintaining their health.
A Challenge You Can Meet
Starting HIV medications is a big deal, but millions of us have done it and found ways to successfully co-exist with these drugs. It requires investing time to understand the meds, creating a collaborative relationship with your healthcare providers, and taking care of yourself emotionally and physically. But with that effort, one quickly adapts to taking these medications and viewing them as just another critical component of living with HIV.
Comment by: Etaoin S.
Fri., Sep. 23, 2011 at 7:15 pm EDT
Without discounting or disrespecting anything Mr. Fawcett wrote, I'd like to offer an alternate perspective. For background: I'm middle-aged, male, work in an office, get most of my exercise only from walking, eat a decent diet, sleep about seven hours a night, and travel occasionally. Like most folks, I have certain daily routines: every day I take a shower, every day I shave, every day I eat food. A daily dose of three pills is, for me, simply one more facet of that routine. I've been on meds for four years now and have been free of side effects the entire time. I've never needed supplements (most of which are of questionable value anyway), don't abuse other substances, and am in a healthy mental state. My sense is that the examples Mr. Fawcett cites, while true, are edge cases; collecting them in one article might give a reader the impression that the majority of people on meds face tiresome daily struggles as a result of that. For me, and for many others I know, starting (and remaining on) the meds is certainly not "a big deal" requiring "personal empowerment" to live in "tenuous balance." Modern meds are vastly superior to what was available 20 years ago. Although I appreciate what Mr. Fawcett has to say -- and yes, some people need to hear this message -- I'd like for people to know that keeping HIV in check can be a simple thing. More troubling, for me, is knowing that millions of people had to die before drug technology advanced to where it is now.