Other Names for this Disease
- Polyneuropathy organomegaly
- Polyneuropathy, Organomegaly, Endocrinopathy, M protein, and Skin changes syndrome
- Crow-Fukase syndrome
- Osteosclerotic myeloma
- PEP syndrome
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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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.
Last updated: 7/20/2015