Other Names for this Disease
- Crow-Fukase syndrome
- Osteosclerotic myeloma
- PEP syndrome
- Polyneuropathy - endocrinopathy - plasma cell dyscrasia
- Polyneuropathy organomegaly
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Your QuestionWhat is the life expectancy of someone with POEMS syndrome? I was diagnosed when I was in my 50s. I am currently taking Revlamid. I walk with a walker and I have had many skin sores.
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Currently, individuals with POEMS syndrome live an average of 14 years after being diagnosed. Two features of this disease, fingernail clubbing and leaking of fluid from the lymph system (known as effusions, edema, ascites), are associated with shorter survival. Individuals who respond well to radiation therapy have been found to have longer survival.
Last updated: 2/20/2013
- Dispenzieri A. POEMS syndrome: 2011 update on diagnosis, risk-stratification, and management. American Journal of Hematology. 2011; 86:591-601. http://www.ncbi.nlm.nih.gov/pubmed/21681783. Accessed 2/18/2013.
- Dispenzieri A, Kyle RA, Lacy MQ, Rajkumar SV, Therneau TM, Larson DR, Greipp PR, Witzig TE, Basu R, Suarez GA, Fonseca R, Lust JA, Gertz MA. POEMS syndrome: definitions and long-term outcome. Blood. 2003; 101:2496-2506. http://www.ncbi.nlm.nih.gov/pubmed/12456500. Accessed 2/20/2013.