"Two steps forward, one step back" seems to characterize most advances in HIV treatment. More often than not, that has meant that, along with the lower viral load and higher CD4 T-cells count, a new antiretroviral drug brings unpleasant -- sometimes even unbearable -- side effects.
One of the most popular antiretrovirals (ARVs) today is the non-nucleoside reverse transcriptase inhibitor (NNRTI) Sustiva. The drug’s appeal for both physicians and people living with HIV comes largely from how well it works as part of a HAART combination [highly active antiretroviral therapy] in suppressing HIV replication and because it is one of the easiest ARVs to take -- just one pill, one time a day.
However, many current and potential users of Sustiva are concerned about its potential for side effects affecting the central nervous system (CNS). These side effects primarily involve various sleep disturbances and changes in mood or mental outlook. Below is a list of the most common CNS side effects, and some of the medical and lifestyle steps that patients, with the help of their health care providers, can take to manage them.
Most studies of Sustiva have shown that the drug’s side effects for most users are mild to moderate and either disappear or become much less serious during or after the first few weeks of use. For others, the side effects persist. Most people taking Sustiva should take it on an empty stomach. Food can cause your body to absorb more Sustiva, making side effects more frequent or more serious.
How Often and for How Long?
Clinical study data show that about 53% of patients taking Sustiva have some kind of CNS symptoms, as opposed to about one-quarter of those in control groups. For 33% of patients, the symptoms were mild. Another 17% experienced symptoms described as moderate, and 2% had severe symptoms. Reports of how long CNS side effects may last vary widely, depending on the kind and size of study and the ways the data are analyzed and reported. As just one example, however, in one study, about 65% of participants reported dizziness at one month on Sustiva treatment, with about 11% reporting dizziness at six months. Similarly, 35% reported insomnia at one month, with some 8% reporting it at six months. The CNS side effects associated with Sustiva generally come under one of five general categories: sleep disturbances (insomnia, unusual dreams -- which people sometimes like, or drowsiness); dizziness; impaired or reduced ability to concentrate; nervousness, anxiety, or agitation; and depression.
Watch for pre-existing conditions, such as anxiety or depression, and treat them. Sustiva might worsen the symptoms. If you were already experiencing difficulty falling asleep or staying asleep before you began to take Sustiva, be sure to tell your physician. That could mean that some other medical or emotional problem is at the root of your sleep problems, and it should get its own diagnosis and treatment. A final caution about using Sustiva: Some doctors also believe that Sustiva should not be used by people who work in certain potentially hazardous occupations where complete concentration is needed at all times -- for example, pilots and operators of heavy machinery.
- Avoid substances that can disrupt sleep, such as drinks containing caffeine (regular coffee, tea, and cola); alcohol; nicotine; and chocolate. This applies especially during the evening.
- Take Sustiva in the morning, rather than at night, as is usually suggested.
- Try to exercise during the earlier parts of the day.
- Try to eliminate recreational drugs like methamphetamine (crystal) or cocaine that stimulate the nervous system.
- Some herbal products, like ephedra and ginseng, can also have stimulating effects.
- Practice relaxation techniques such as yoga, meditation, breathing exercises, or others which may help limit sleep disturbances.
- Practice what is called good sleep hygiene, a frequent recommendation for anyone experiencing sleep disturbances. Sleep hygiene includes measures like going to bed at the same time each night; getting up at the same time each morning; not watching television in bed; having a bedroom that is comfortable, quiet, and cool; and using your bed only for sleep and sexual activity.
- Those having trouble falling asleep may require a prescription for a relatively short-acting sedative like Ambien or Ativan.
- For those waking up during the night or too early in the morning, your doctor may want to prescribe a longer-acting sedative like Desyrel or Restoril.
- Maintaining regular sleep habits, as suggested above, may help.
- Try to relax or enjoy pleasant activities before going to bed -- for example, listening to soft music or watching an enjoyable movie.
- Avoid disturbing TV programs, movies, or reading material before bedtime.
- Taking your Sustiva dose during the day, if possible, may also help.
- A sedative like Ativan or a low dose of Desyrel could be tried.
- In more rare cases, a physician may prescribe a more powerful tranquilizer or antipsychotic drug like Haldol or Zyprexa.
- Take the drug in the evening or at bedtime, if you’re not doing that already.
- Time your dose of Sustiva to 12-15 hours before you need to start work.
- Caffeine may help you get past short-term drowsiness.
- If the problem is chronic, your doctor may suggest a prescription for a drug like the CNS stimulants Ritalin or Cylert.
- Take Sustiva at bedtime, which is the standard advice for beginning therapy. Take your dose 12-15 hours before you need to start work.
- Avoid driving.
- Clear obstacles that may contribute to a fall, such as clothes on the floor.
- Some practitioners will also urge you to drink more water and to stop using the supplements ephedra and ginseng.
- Pharmaceutical treatments may include Antivert or Dramamine, antihistamines that also work against nausea and dizziness.
Impaired or Reduced Concentration
- Use appointment books, calendars, or notes to keep track of things you need to do.
- Drinks that contain caffeine -- like coffee, tea, or cola -- may help improve your mental alertness.
- Some doctors may suggest a prescription for a drug like Ritalin or Cylert.
Nervousness, Anxiety, or Agitation
- Limit or cut consumption of stimulants, such as caffeine, prescription or non-prescription medicines that can cause stimulation, and recreational drugs.
- Try stress-reducing activities like most forms of exercise, yoga, meditation, or breathing exercises, which can also relieve symptoms of nervousness, anxiety, or agitation.
- Medications include tranquilizing drugs (called anxiolytics) such as Ativan, Klonopin, or one of the benzodiazepines (Valium, Xanax).
- For more severe symptoms, like mild agitation, Zyprexa, Haldol, or Risperdal may be tried -- but generally only after a more formal psychiatric evaluation.
Depression occurs in 22-45% of all people with HIV, and it is diagnosed and treated less than it should be. If you have any signs of or history of depression, be sure to tell your doctor. In addition to a more formal psychiatric evaluation, you may possibly start therapy with an antidepressant before beginning to use Sustiva.
- Avoid alcohol and recreational drugs.
- Use relaxation and stress reduction techniques.
- Maintain an exercise program.
- Brighten your surroundings and get out into the fresh air and sunshine.
- Keep a journal that lets you notice things that affect your mood.
- Antidepressant medications of first resort are the selective serotonin reuptake inhibitors (SSRIs), which include Prozac, Paxil, Zoloft, and several others.
- For severe symptoms, an anxiolytic or a sedative may be prescribed.
- St. John’s Wort can have potentially serious interactions with Sustiva, and you should not take it.