POEMS syndrome is a rare condition caused by the body producing abnormal plasma cells (a type of blood cell which produces antibodies to fight off infections). This blood disorder affects multiple organs in the body. It is named after the five common features of the syndrome described below.
Polyneuropathy - nerve damage leading to weakness, numbness and pain in the arms and legs
Organomegaly - an enlarged spleen and/or liver
Endocrinopathy - hormonal problems
Monoclonal plasma cell disorder - an overproduction of abnormal plasma cells which lead to other, multi-system effects
Skin changes - darkening of skin, red spots on the body, hair growth, nail changes, peripheral swelling.
UCLH runs a national POEMS clinic for diagnosis, support and treatment of patients suspected or actual POEMS syndrome. A team of specialist clinicians runs the clinic with support from specialist nurses, neurophysiology, ISO-accredited diagnostic laboratories and a neurorehabilitation service with physiotherapy, orthotics, occupational therapy and psychologists.
UCLH currently manages one of the largest reported group of POEMS patients in Europe, with approximately 120 people attending the clinic.
We conduct research into POEMS syndrome to understand more about UK POEMS patients, mechanisms of disease and how we treat the condition most effectively. We are currently running a study looking into the inflammation molecules produced in POEMS syndrome and, in particular, how they cause nerve damage.
A Patient Information Meeting was held in January 2020 and we hope to hold more in future.
Other referral information
For urgent clinical questions or advice please contact Aviva or Emma, our clinical nurse specialists. They can be contacted via the Haematology Telephone Line on 020 3447 7359 from Monday to Friday 09:00–17:00. For out-of-hours advice (emergency calls at evenings, weekends and Bank Holidays) please call 0785 2220 900.
For clinicians who would like to refer to the POEMS service please contact Professor Michael Lunn on 020 3448 8121 or Dr. Shirley D’Sa on 020 3447 7101.
For more information about the Neuroimmunology Lab at the National Hospital for Neurology & Neurosurgery (NHNN) regarding specialist blood and CSF samples (e.g. VEGF) please visit our Neuroimmunology page.