POEMS syndrome is a rare blood disorder that damages your nerves and affects many other parts of the body. POEMS stands for these signs and symptoms:

  • Polyneuropathy. Numbness, tingling and weakness in your legs — and over time, maybe in your hands — and difficulty breathing.
  • Organomegaly. Enlarged spleen, liver or lymph nodes.
  • Endocrinopathy. Abnormal hormone levels that can result in underactive thyroid (hypothyroidism), diabetes, sexual problems, fatigue, swelling in your limbs, and problems with metabolism and other essential functions.
  • Monoclonal plasma-proliferative disorder. Abnormal bone marrow cells (plasma cells) that produce a protein (monoclonal protein) that can be found in the bloodstream.
  • Skin changes. More color than normal on your skin, possibly thicker skin and increased facial or leg hair.

POEMS syndrome can be misdiagnosed because the signs and symptoms mimic those of other disorders. POEMS syndrome progresses rapidly and may become life-threatening, so early diagnosis is important.

Treatment for POEMS syndrome may improve your symptoms but does not cure the condition. Treatment options include radiation therapy, chemotherapy and peripheral blood stem cell transplant.

  • Experience. Every year, Mayo Clinic specialists treat more than 2,200 people with uncommon disorders of plasma protein metabolism, including POEMS syndrome.
  • Expertise. POEMS syndrome can be difficult to diagnose. Mayo Clinic has doctors who specialize in diagnosing and treating protein disorders of the blood, such as POEMS.
  • Excellent transplant care. Mayo Clinic is a leader in exploring the use of blood stem cell transplants to treat POEMS syndrome.
  • New ideas. Mayo Clinic researchers work to improve treatment of POEMS syndrome. You have access to the expertise of Mayo's clinician-researchers.

At Mayo Clinic, we assemble a team of specialists who take the time to listen and thoroughly understand your health issues and concerns. We tailor the care you receive to your personal health care needs. You can trust our specialists to collaborate and offer you the best possible outcomes, safety and service.

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The cause of POEMS syndrome isn't known. But people with POEMS syndrome have an increased number of plasma cells. These cells produce an abnormal amount of a type of protein, which can damage other parts of the body.

Mayo Clinic doctors specializing in blood disorders (hematologists) have experience diagnosing POEMS syndrome. Your Mayo specialist will start with a thorough medical history and physical examination. Blood and urine samples will be taken to check your protein and hormone levels.

Based on the results, you may then have:

  • Imaging tests, including a computerized tomography (CT) or positron emission tomography (PET) scan, to check for bone abnormalities.
  • Bone marrow biopsy, in which a small sample of your bone marrow is removed and tested. Special stains (immunohistochemistry) may be used to better detect problems with the plasma cells in your blood.

Depending on your signs and symptoms, you may have further evaluation by doctors specializing in the brain and nervous system (neurology), eyes (ophthalmology), hormonal disorders (endocrinology), lungs (pulmonary medicine), and physical medicine and rehabilitation.

Read more about CT scan, PET scan and biopsy.

Treatment generally focuses on managing the underlying plasma cell disorder. At Mayo Clinic, a multispecialty team of doctors works together to develop a personalized treatment plan for you based on your needs.

The treatment options include:

  • Radiation therapy to destroy plasma cells in abnormal bone, if you don't have widespread lesions in your bone marrow.
  • Chemotherapy to destroy abnormal cells, if bone marrow lesions are widespread.
  • Peripheral blood stem cell transplant, in which your own stem cells are collected from your blood and stored for a short time while you receive high-dose chemotherapy. The stem cells are then returned to your body via a vein.

Treatment often results in symptom relief. The extent of relief depends on the severity of the symptoms before treatment.

Other ways to manage your symptoms include:

  • Anti-inflammatory medications, to subdue your body's immune response and to help produce extra bone marrow cells
  • Pain medications
  • Hormone replacement therapy, if you're experiencing hormonal abnormalities
  • Physical therapy to strengthen limbs weakened by neuropathy
  • Braces or walking aids, if you experience disability from neuropathy

People with POEMS syndrome need lifelong care because relapse is possible. At Mayo Clinic, follow-up exams are scheduled every three months.

Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people. In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.

Specialists in hematology and oncology at Mayo Clinic diagnose and treat adults with POEMS syndrome.

For appointments or more information, call the Central Appointment Office at 800-446-2279 (toll-free) 8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday or complete an online appointment request form.

Specialists in hematology and oncology at Mayo Clinic diagnose and treat adults with POEMS syndrome.

For appointments or more information, call the Central Appointment Office at 904-953-0853 8 a.m. to 5 p.m. Eastern time, Monday through Friday or complete an online appointment request form.

Specialists in hematology at Mayo Clinic diagnose and treat adults with POEMS syndrome.

For appointments or more information, call the Central Appointment Office at 507-538-3270 7 a.m. to 6 p.m. Central time, Monday through Friday or complete an online appointment request form.

See information on patient services at the three Mayo Clinic locations, including transportation options and lodging.

Researchers at Mayo Clinic study how to improve the diagnosis and treatment of people with POEMS syndrome. Specific efforts include defining criteria for diagnosing the disorder, evaluating the effectiveness of radiation treatment and using stem cell transplants.

See a list of publications by Mayo Clinic authors on POEMS syndrome on PubMed, a service of the National Library of Medicine.

Jul. 17, 2014