Some severe cases of ichthyosis have improved when treated with oral retinoid therapy. The retinoids are a class of pharmaceutical product available only by prescription, and a physician who is experienced in their use must monitor their use closely. The key retinoid drugs, Soriatane® (acetretin) and Accutane® (isotretinoin), are derivatives of vitamin A, which in its natural form is toxic in high doses. Although these synthetic derivatives of vitamin A substantially reduce the natural toxicity, they still remain potent and potentially dangerous drugs. Tazarotene is a different retinoid compound that is used topically for similar problems and has shown benefit when used to treat ectropion (pulling down of the eyelids).   A thorough consultation with your child’s physician to discuss the pros and cons of retinoid therapy and whether or not it is right for your child, is the most critical step in the decision making process.

Because retinoids may cause significant effects on bone development, their use in children who are still in their growing years requires careful consideration. Regardless of age, periodic X-rays to monitor bone development are essential. Other side effects include fluctuations in body chemistries (for example, cholesterol, serum triglycerides, and liver function), so retinoid therapy requires a physician to closely monitor the patient, completing essential tests at regular intervals.

Most significant, perhaps, is that the retinoids are highly teratogenic, that is, their presence in the system of a pregnant woman has a high likelihood of causing major birth defects.  Even one pill of an oral retinoid can cause birth defects.  Women taking oral retinoids must discontinue use of the drug for several months to several years, depending on which retinoids they were using, before attempting to become pregnant.

The beneficial effects of retinoid therapy on the skin will last only while the drug is being taken. When therapy is discontinued, the skin will revert to its previous condition. Therefore, the retinoids are considered long term therapy. Given the dangers associated with their use,
one must weigh carefully the advantages and disadvantages. This is particularly true for women of childbearing age and children.

Anyone using retinoid therapy must have a close working relationship with a physic

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The information on these pages has been provided through the generosity of the Ace in the Hole Foundation.

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors nor Foundation staff and officials and sponsoring foundations endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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