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Diseases

Genetic and Rare Diseases Information Center (GARD)

POEMS syndrome


Other Names for this Disease
  • Crow-Fukase syndrome
  • Osteosclerotic myeloma
  • PEP syndrome
  • Polyneuropathy - endocrinopathy - plasma cell dyscrasia
  • Polyneuropathy organomegaly
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

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 long-term outlook for people with POEMS syndrome?

POEMS syndrome is a chronic condition. In many cases, there is progressive peripheral neuropathy until an affected person becomes bedridden. The overall median survival has been estimated to be 13.7 years, while those with clubbing or extravascular volume overload may have median survivals of 2.6 and 6.6 years, respectively. Those who receive radiation therapy with a good response to treatment are thought to have longer survival. Death usually occurs from lack of nourishment or bronchopneumonia.[1]
Last updated: 7/20/2015

References
  • S Vincent Rajkumar. POEMS syndrome. UpToDate. Waltham, MA: UpToDate; May 15, 2015;
Other Names for this Disease
  • Crow-Fukase syndrome
  • Osteosclerotic myeloma
  • PEP syndrome
  • Polyneuropathy - endocrinopathy - plasma cell dyscrasia
  • Polyneuropathy organomegaly
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.