Supplements essential for common vitamin D deficiency in EPP: Study

Monitoring of vitamin D levels recommended, regardless of Scenesse treatment

Andrea Lobo, PhD avatar

by Andrea Lobo, PhD |

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Vitamin D supplementation significantly increases the levels of vitamin D and reduces its deficiency, which is prevalent in adults with erythropoietic protoporphyria (EPP), regardless of whether they’re being treated with Scenesse (afamelanotide), a recent study reports.

However, treatment with Scenesse did not significantly affect the levels of vitamin D in these patients, except in those older than 50, or after prolonged periods of treatment (2.5 to five years).

“Based on these findings, we recommend that future guidelines include [vitamin D] supplementation prescription and regular monitoring of vitamin D levels in EPP patients, including those receiving [Scenesse],” researchers wrote.

The study, “The effects of cholecalciferol and afamelanotide on vitamin D levels in erythropoietic protoporphyria; a multicentre cohort study,” was published in the British Journal of Dermatology.

EPP is a form of porphyria marked by skin hypersensitivity to sunlight and some types of artificial light, resulting in vitamin D deficiency and low bone density, or osteoporosis, in a significant proportion of patients.

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Scenesse is skin implant to increase pain-free light exposure

Scenesse, developed by Clinuvel, is a skin implant approved in the U.S. and Europe to increase pain-free light exposure and prevent phototoxic reactions, which refers to damage to the skin brought on by sunlight exposure. Each implant contains 16 mg of afamelanotide and is placed under the skin once every two months, during spring and summer.

However, “studies on vitamin D levels in EPP have only investigated patients who were not treated with [Scenesse].”

To investigate the prevalence of vitamin D deficiency in EPP patients receiving afamelanotide, and/or vitamin D (cholecalciferol) supplementation, the researchers conducted an observational study involving adults with EPP who were followed at two medical centers in the Netherlands and Germany.

A total of 230 patients (138 from the Netherlands and 92 in Germany), mostly men (53%) who were a mean age of 39.1 years, were followed up for a median of eight months.

Overall, the researchers conducted 1,774 vitamin D measurements, corresponding to an average of 7.7 per patient at a median interval of two months.

Vitamin D measurements were conducted in four groups of patients. A total of 135 measurements were performed in patients who were not receiving treatment, 331 in those who were receiving Scenesse, 104 in those who were on vitamin D supplementation, and 1,104 in those receiving both treatments.

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79% of EPP patients deficient in vitamin D

The prevalence of vitamin D deficiency (vitamin D levels equal to or below 50 nmol/L) in EPP patients was 79%, with more than half (55%) of the patients having a severe deficiency (levels equal to or below 30 nmol/L).

Vitamin D supplementation significantly increased the median levels of vitamin D to 60 nmol/L, if given alone, or to 62 nmol/L if combined with Scenesse, lowering the prevalence of vitamin D deficiency to 46% and that of severe vitamin D deficiency to 19%.

Treatment with Scenesse alone did not significantly increase the median levels of vitamin D, nor did it reduce the prevalence of vitamin D deficiency, which was at 71%.

After adjusting data for sex, age, season, and treatment group, the researchers found that both vitamin D supplementation and combined treatment significantly increased vitamin D levels over time. These effects were observed immediately after treatment started.

When given alone, Scenesse significantly increased vitamin D levels only after 2.5 to five years of starting treatment. Significant increases in vitamin D levels were also observed in patients who were on Scenesse and older than 50.

Subgroup analysis also revealed women with EPP had higher vitamin D levels than men, and that treatment effects were generally more favorable in women. Vitamin D supplementation was more effective during winter months, and all treatments had a more pronounced effect in older patients in general.

“Our study highlights the continued importance of cholecalciferol as part of supportive care for EPP patients, even in the availability of [Scenesse],” the researchers wrote, adding “future research should focus on EPP patients receiving afamelanotide for extended durations to assess its impact on vitamin D levels.”