Recommendations for monitoring patients with EPP
| Condition . | Recommendation . | Periodicity . |
|---|---|---|
| Gallstones or cholestasis | Erythrocyte protoporphyrins | Every year |
| Liver function tests (aspartate aminotransferase, alanine aminotransferase, bilirubin) | Every year | |
| Abdominal imaging (ultrasound or computed tomography) | Every year; consider shorter intervals for patients with erythrocyte protoporphyrins >2000 μg/dL | |
| Low bone mineral density | Serum vitamin D | Every year |
| Alkaline phosphatase | Every year | |
| Bone mineral density (dual-energy X-ray absorptiometry scan) | Baseline, then every year if treating osteopenia or osteoporosis; repeat every 3–5 y if normal scans | |
| Iron deficiency anemia | Complete blood count | Every year |
| Ferritin and transferrin saturation | Every year | |
| Skin hyperpigmentation or melanocytic nevi | Full body skin exam | Every 6 mo if on afamelanotide |
| Condition . | Recommendation . | Periodicity . |
|---|---|---|
| Gallstones or cholestasis | Erythrocyte protoporphyrins | Every year |
| Liver function tests (aspartate aminotransferase, alanine aminotransferase, bilirubin) | Every year | |
| Abdominal imaging (ultrasound or computed tomography) | Every year; consider shorter intervals for patients with erythrocyte protoporphyrins >2000 μg/dL | |
| Low bone mineral density | Serum vitamin D | Every year |
| Alkaline phosphatase | Every year | |
| Bone mineral density (dual-energy X-ray absorptiometry scan) | Baseline, then every year if treating osteopenia or osteoporosis; repeat every 3–5 y if normal scans | |
| Iron deficiency anemia | Complete blood count | Every year |
| Ferritin and transferrin saturation | Every year | |
| Skin hyperpigmentation or melanocytic nevi | Full body skin exam | Every 6 mo if on afamelanotide |