I have skin only Langerhans cell histiocytosis (LCH), a rare blood disease, chronic myelomonocytic leukemia (CMML) (an MDS/MPN crossover), and immune thrombocytopenia (ITP). These three rare blood diseases may be related, but it is not known because of a lack of research in rare diseases.
Diagnosed with the painful skin lesions off LCH in 2016, I tried many topical treatments and brachytherapy (radiation) without relief.
After a CBC in 2019 showed a platelets count dangerously low at 2, a bone marrow biopsy showed a diagnosis of CMML. My team of hematologists, and a cutaneous oncologist, decided to try hydroxyurea, often used for LCH and forCMML. It has been a miracle for me. I have had occasional headaches that are gone by 10 or 11am and a weight gain of 8-9 lbs. This is a small price to pay for the relief to the painful skin lesions and stability of my blood counts!
This is a very old medication, from the 1960s, that is commonly used very long term for Sickle cell disease in young people and usually with minimal side effects. If it is beneficial for our chronic blood diseases, we can be grateful. I understand that a few people have side effects that may be serious, but it is generally well tolerated and certainly proven!