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Long-term opioids may not be best pain management option for all sickle cell patients

In a small study looking at pain assessments in adults with sickle cell disease, researchers at Johns Hopkins says overall, those treated long-term with opioids often fared worse in measures of pain, fatigue and curtailed daily activities than those not on long-term opioids.

In a report on the new research, published online in a special sickle cell disease supplement of the American Journal of Preventive Medicine, C. Patrick Carroll, M.D., and colleagues evaluated pain experiences of participants with sickle cell disease who were prescribed long-term opioids.

“We need to be careful and skeptical about giving increasing doses of opioids to patients with sickle cell disease who are in chronic pain if it isn’t effective,” says Carroll, director of psychiatric services for the Johns Hopkins Sickle Cell Center for Adults and assistant professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. “Too little is known about the effects of long-term opioid management of chronic pain.”

Sickle cell disease is a rare blood disorder that causes excruciating pain. It is a genetic disorder, predominantly affecting African-Americans in the U.S., and caused by a mutation in the gene that makes hemoglobin – the oxygen-carrying protein that gives the red pigment to red blood cells. In cells with the mutation, the hemoglobin forms long chains that cause the normally round and plump red blood cells to take on a sicklelike shape and clog up blood vessels. The clogged vessels can cut off oxygen to tissues and cause episodes of severe pain, known as crises. The pain from these episodes frequently drives people with the disease to emergency rooms, where they are aggressively treated for pain – usually with intravenous opioid pain medications.

Often, adult patients with sickle cell disease also develop chronic pain, and the way it manifests is poorly understood. Because advances in treatment of sickle cell disease have led to many more people living well into adulthood, chronic pain has been a growing problem for people with the disorder. These patients are also often treated with opioid pain medications for this chronic pain. However, there isn’t good evidence that long-term opioid therapy is effective. Animal research and some human studies suggest that opioids can paradoxically increase pain sensitivity. This concern, combined with rising awareness of the dangers of opioid therapy, particularly at high doses, has led to a re-evaluation of long-term opioid therapy for many conditions. However, those patients with sickle cell disease who have chronic pain often are prescribed high doses of opioids because the disorder is so hard to treat and recurrent crises can lead to escalating doses.

For the new study, the Johns Hopkins team recruited 83 people with sickle cell disease – 57 women and 26 men – over the age of 18, with an average age of 39. The physicians examined patient medical records to determine who was taking long-term opioids. Twenty-nine patients were prescribed daily, long-acting opioids to manage their pain by their health care provider, and 54 patients weren’t on long-term opioids.