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Genetic and Rare Diseases Information Center (GARD)

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POEMS syndrome

Other Names for this Disease
  • Crow-Fukase syndrome
  • Polyneuropathy organomegaly
  • Polyneuropathy, Organomegaly, Endocrinopathy, M protein, and Skin changes syndrome
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Your Question

What 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.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is the life expectancy for individuals with POEMS syndrome?

Currently, individuals with POEMS syndrome live an average of 14 years after being diagnosed.[1]  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.[1]  Individuals who respond well to radiation therapy have been found to have longer survival.[1][2]
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. 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. Accessed 2/20/2013.