Why is long-term monitoring required in patients with Langerhans cell histiocytosis (LCH)?

Updated: Sep 16, 2020
  • Author: Cameron K Tebbi, MD; Chief Editor: Vikramjit S Kanwar, MBBS, MBA, MRCP(UK), FAAP  more...
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Patients with Langerhans cell histiocytosis (LCH) must be followed for the disease and its possible complications and morbidities on a long-term basis. Even patients with low-risk disease can suffer long-term complications such as pain; growth delay; neurodegenerative disorders; pituitary dysfunction, including diabetes insipidus; hearing loss; and sclerosing cholangitis. In addition, the long-term side effects of treatment require careful follow-up. 

Damage due to LCH can be substantial. Polyendocrinopathies due to pituitary damage and neurodegenerative disorders of uncertain etiology are major concerns. The latter can occur several years after resolution of the disease. Progressive cerebellar atrophy has been reported. Symptoms such as ataxia, dysmetria, dysarthria, tremor, speech problems, visual disorders, kinetic malfunctions, and behavioral dysfunction require careful and complete neurologic evaluation and follow-up. This includes routine use of neurologic scales such as the ataxia rating scale, ophthalmologic exams, neuroendocrine tests, biochemical profiles, MRI, and appropriate referrals. 

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