Cimetidine Research Study in Patients with EPP and XLP

Filled
Written By United Porphyrias

Patients with Erythropoietic Protoporphyria (EPP) or X-Linked Porphyria (XLP) were recruited for an FDA-sponsored research study on cimetidine. The study is assessing whether cimetidine (a medication normally used to treat gastrointestinal issues such as ulcers or acid reflux) reduces protoporphyrin IX (PPIX) levels which may impact photosensitivity.

Participating Study Sites:

  • Dr. Amy Dickey,  Massachusetts General Hospital

  • Dr. Karl Anderson, University of Texas Medical Branch

  • Dr. Herbert Bonkovsky, Atrium Wake Forest Baptist Health

Fast Facts:

  • 3 study sites in the US

  • 20 total participants enrolled

  • Patients ages 15+ are eligible

  • Patients currently on Scenesse (afamelanotide) were eligible

Of interest, a recent study in Denmark indicated the potential for cimetidine to lower protoporphyrin IX (PPIX) in patients with erythropoietic protoporphyria. Click here to read about it.

United Porphyrias
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