Plasma cell disorders

POEMS syndrome

If you or someone you love has just heard this diagnosis, start here. This guide explains what the condition is, how it is usually treated and where a transplant fits.

POEMS syndrome is a rare disorder caused by an abnormal plasma-cell population, with nerve damage and effects on several organs. Treatment targets the plasma cells; an autologous stem cell transplant is an option for eligible people with systemic disease.

Other names and abbreviations

POEMS, polyneuropathy, organomegaly, endocrinopathy, monoclonal plasma-cell disorder, skin changes, Crow–Fukase syndrome, Takatsuki syndrome, osteosclerotic myeloma

In short

  • POEMS syndrome is a rare disorder of abnormal plasma cells. A group of these cells causes nerve damage and problems in several organs.
  • Treatment targets those plasma cells. Radiation treats disease limited to one or a few bone spots, and medicines treat widespread disease.
  • For eligible people with widespread disease, one option is high-dose chemotherapy followed by their own stem cells. Because the cells are their own, a donor is not normally needed.
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Underlined words open a short explanation. See all terms

Where transplant fits

POEMS may be treated with and in eligible patients. The cells come from the patient, and a registry donor is not normally needed.

Treatment depends on the exact diagnosis, disease stage, prior treatment and the person’s health.

Key facts

Who it affects
POEMS mainly affects adults, often in middle age.
How common
About 0.3 people per 100,000People living with POEMS syndrome (prevalence), Japan, national survey 2003 Source: How common
Cells used in a transplant
The patient’s own collected blood-forming cells for autologous stem cell rescue, when that procedure is appropriate.
Where a donor fits
Usually the person’s own cells

The condition

What it is

The acronym refers to polyneuropathy, organ enlargement, endocrine problems, a monoclonal protein and skin changes. Diagnosis does not require every feature in the acronym, but it does require a specific combination of findings including neuropathy and a monoclonal plasma-cell disorder.

Other important features can include sclerotic bone lesions, fluid accumulation, raised and an elevated vascular endothelial growth factor (VEGF) level. VEGF is useful in assessment and monitoring, but no single blood result diagnoses POEMS on its own.

Where POEMS syndrome starts in the bloodPOEMS syndrome is caused by an abnormal group of plasma cells, which can be small even when nerve and organ symptoms are substantial.Simplified illustration.

Marked as affected: plasma cells.

  • Blood stem cell, In the bone marrow
    • Myeloid line
      • Red blood cells
      • Platelets
      • Granulocytes
      • Monocytes
    • Lymphoid line
      • B cells
        • Plasma cells, Affected, Develop from B cells
      • T cells
      • NK cells, Natural killer cells

What causes it

An abnormal plasma-cell clone and altered signaling proteins contribute to the syndrome. The underlying mechanism is not fully understood, and the reason a person develops it is usually unknown.

POEMS is not contagious and is not simply the same disease as conventional multiple myeloma. The plasma-cell burden can be small while nerve and organ symptoms are substantial.

Symptoms and effects

Peripheral neuropathy commonly causes numbness, pain, weakness and problems walking. Hormonal abnormalities, skin changes, an enlarged liver or spleen and fluid retention can affect daily life.

Breathing and circulation can also be affected. Neurological recovery can be slow, so reduced plasma-cell activity and a lower VEGF level do not mean that strength or sensation will immediately return.

Where POEMS syndrome can affect the bodyNerve damage is the main problem, and the abnormal plasma cells can affect several other organs too.Simplified illustration.

A simple drawing of a body. Often affected: bones and nerves. Can also be affected: eyes, hormone glands, airway and lungs, liver, spleen and skin.

Often affected

  • Bones: hardened bone spots
  • Nerves: numbness, pain, weakness and problems walking

Can also be affected

  • Eyes: swelling at the back of the eye
  • Hormone glands
  • Airway and lungs
  • Liver: enlarged
  • Spleen: enlarged
  • Skin

This shows the parts of the body the condition can affect. Most people have only some of these, and the drawing says nothing about how severe any of them will be.

Diagnosis and treatment

How POEMS syndrome is diagnosed

POEMS is rare and easy to miss. The main problem is usually nerve damage (neuropathy). It usually affects both sides of the body evenly, spreads upward over time, and affects both feeling and strength. Nerve tests (nerve conduction studies) show the type of damage. POEMS can look like another nerve disease, CIDP (chronic inflammatory demyelinating polyneuropathy). Some people are treated for CIDP first, and POEMS is found only when that treatment does not help.

Some clues point to POEMS. These include an abnormal protein (almost always the lambda type), a high platelet count, widespread swelling, or swelling at the back of the eye (papilledema). Key tests include blood and urine immunofixation to find the small abnormal protein, a blood test for VEGF (vascular endothelial growth factor), and CT or PET-CT scans of the bones. About 95% of people in Western studies have hardened (sclerotic) bone spots.

A biopsy, hormone tests, a heart ultrasound and breathing tests are part of the usual first tests. Doctors diagnose POEMS when a person has nerve damage and a plasma-cell disorder, plus another major feature: sclerotic bone lesions, high VEGF or Castleman disease. At least one minor feature is also needed, such as an enlarged spleen or liver, hormone problems, skin changes or fluid build-up.

The abnormal plasma-cell group in POEMS is usually small, often under 5% of the marrow, so it can be missed without careful testing.

How it is treated

Radiotherapy can treat localized disease driven by one or a few suitable bone lesions when there is no disseminated marrow involvement. The extent of the clone is therefore important in deciding whether local or systemic treatment is needed.

Systemic disease is treated with plasma-cell-directed medicines. High-dose melphalan followed by autologous stem cell rescue is an established option for appropriately selected patients. Organ function, fluid overload, pulmonary problems and functional status affect transplant planning.

Other drug combinations can be used when transplant is unsuitable or as part of a treatment sequence. Pre-existing neuropathy can influence medicine selection. Rehabilitation, pain management, endocrine treatment and support for affected organs are needed alongside control of the clone.

How POEMS syndrome can be treatedTreatment targets the plasma cells, and the right kind depends on how widespread the disease is.Simplified illustration.

Kinds of treatment described for POEMS syndrome: supportive care, medicines, radiation and a transplant with the person’s own cells (for some people).

After diagnosis, the options described here

  • Supportive care

    Rehabilitation, pain management, hormone treatment and support for affected organs are needed alongside it.

  • Medicines

    Widespread disease is treated with medicines aimed at the plasma cells.

  • Radiation

    Radiation treats disease limited to one or a few bone spots.

  • Transplant with the person’s own cells, For some people

    For eligible people with widespread disease, high-dose chemotherapy is followed by their own stem cells.

    What a transplant involves

These are the kinds of treatment this page describes, not a plan. Which ones fit, in what order and whether they are combined differs from person to person.

When transplant specialists are usually consulted

NMDP and ASTCT guidelines recommend a transplant consultation at diagnosis for POEMS syndrome. When the disease is widespread, rather than limited to one or a few bone lesions, high-dose chemotherapy with the person’s own stem cells is one of the main treatment options.

Read the guidance

What a transplant involves

What a transplant with your own cells involvesTiming and details differ by person and transplant center.Simplified illustration.
  1. Step 1

    : Collecting the person’s own cells

    Medicines move stem cells out of the marrow and into the blood. The cells are then collected and frozen.

  2. Step 2

    : High-dose treatment

    The person receives strong treatment, usually high-dose chemotherapy.

  3. Step 3

    : Cells returned, Day 0

    The stored cells are thawed and given back through a vein, like a transfusion.

  4. Step 4

    : Blood counts recover

    The returned cells settle in the marrow and start making blood cells again.

  5. Step 5

    : Follow-up

    The care team keeps checking recovery and watches for infection and for the condition coming back.

A transplant, step by step

Daily life and the donor’s role

Living with the condition and treatment

Mobility problems may persist during recovery even when tests show a treatment response. Physical and occupational therapy, walking aids and help with everyday tasks can be important parts of the plan.

Autologous transplantation can cause temporary blood-count suppression and infection risk. POEMS also requires attention to fluid and inflammatory complications around . Follow-up tracks both the plasma-cell disorder and functional improvement over time.

The role of a blood stem cell donor

The transplant used for POEMS is usually autologous: the person’s own are collected and returned after high-dose chemotherapy. It does not replace damaged nerves with donor cells.

An unrelated registry donor is not part of usual POEMS treatment, and is not routine. Registry volunteers help people with other conditions who do need donated cells.

Where transplant cells come fromWhich source a team considers depends on the condition, the person and who is available.Simplified illustration.

Highlighted here: the person’s own cells.

  • The person’s own cells

    Autologous transplant, no donor

    Collected from the person before treatment, then given back.

  • A relative

    Donor transplant (allogeneic)

    A brother or sister may be a full match. Parents and children can be half-matched donors.

  • An unrelated volunteer

    Donor transplant (allogeneic)

    Found through a donor registry.

  • Donated cord blood

    Donor transplant (allogeneic)

    Collected from a baby’s umbilical cord after birth and stored in a public bank.

Looking ahead

Looking ahead

Outlook for POEMS syndrome

Most people with POEMS live many years, and survival has improved with modern treatment. Younger age, a higher blood albumin level and a complete response of the plasma-cell disorder to treatment are linked with longer survival. Fluid around the lungs (pleural effusion), high blood pressure in the lungs and weaker kidney function are linked with a harder course.

Nerve recovery is slow. Often there is no clear change until about 6 months after treatment ends, and the full gain can take 2 to 3 years. Swelling, fluid build-up and skin changes usually improve sooner. Physical therapy and ankle-foot braces help people stay mobile and avoid falls while nerves heal. POEMS can come back. In one Mayo Clinic group, most people whose disease came back could be treated again with other medicines or radiation.

About these numbers. Each one says which group of people it comes from, and the place and years where the source gives them. It describes what happened across that group, not what will happen to any one person. And a figure measured among people who had a transplant is not the same as the number of people who need one.

These figures come from one major U.S. referral center. People treated there may differ from everyone with POEMS, and no figure can predict how one person will do.

Common questions

Is POEMS syndrome a cancer?

POEMS is linked to a small group of abnormal plasma cells. The National Cancer Institute includes it in its summary of plasma cell neoplasms and calls it a rare paraneoplastic condition. That means most of the illness comes from effects linked to the abnormal cells, not from the cells crowding the bone marrow. The plasma-cell group is usually small, often under 5% of the marrow. VEGF levels are high, and the main problems are nerve damage, fluid build-up and hormone changes. It is often treated with medicines also used for myeloma.

What is the life expectancy with POEMS syndrome?

Outlook is generally good, and it has improved over time. Younger age, a higher albumin level and a complete response to treatment are linked with longer survival. Fluid around the lungs, high blood pressure in the lungs and weaker kidneys point to a harder course. The outlook section on this page gives the figures, with the groups they describe.

Why is POEMS syndrome often mistaken for CIDP?

Both cause nerve damage that can look alike on nerve tests. CIDP (chronic inflammatory demyelinating polyneuropathy) is an immune nerve disease. Experts advise thinking of POEMS when nerve damage comes with an abnormal antibody protein (especially lambda), a high platelet count, widespread swelling or swelling at the back of the eye. In one study, 54% of people with POEMS had a high platelet count, compared with 1.5% of people with CIDP. A VEGF blood test also helps tell them apart.

Does nerve damage from POEMS get better?

Often, yes, but slowly. After successful treatment, there is usually a lag, often with no clear change until about 6 months after treatment ends. The greatest improvement may take 2 to 3 years. In reported groups of people treated with a transplant using their own cells, everyone had at least some nerve improvement. Physical therapy and ankle-foot braces help prevent falls and joints that stiffen for good (contractures) in the meantime.

Is POEMS syndrome the same as multiple myeloma?

No. Both involve abnormal plasma cells, and an older name for POEMS is osteosclerotic myeloma. But in POEMS the main problems are nerve damage, hormone changes and fluid build-up. Bone pain, very high marrow plasma-cell counts and kidney failure are not typical. VEGF levels are high, most people have hardened bone spots, and the abnormal protein is almost always the lambda type. Survival is usually better than in myeloma.

Who gets POEMS syndrome?

POEMS is rare. A 2003 national survey in Japan found about 3 people with POEMS for every million people. It was once thought to be more common in people of Japanese descent, but large groups of patients have since been reported from France, the United States, China and India. In a Mayo Clinic series of 99 people, the median age at presentation was 51, and 63% were men.

How a transplant using your own cells works

For your next appointment

POEMS syndrome

From the Jada Bascom Foundation disease library, jadabascomfoundation.org. Printed .

Questions to bring to your care team

  • Is my disease limited to one or a few bone lesions that radiation could treat, or is it in the marrow or many bones?
  • What is my VEGF level, and how will VEGF and PET scans be used to track my response?
  • Which treatments are safest for my nerves, since some myeloma medicines can make neuropathy worse?
  • If a transplant with my own cells is planned, how will you handle the fluid and inflammation problems that can happen as the new cells grow?
  • What is the goal of each treatment you are suggesting?
  • How does a transplant compare with the other treatments on offer?
  • Where can our family find support during treatment?

A one-page list to take to the next appointment, with room for notes.

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Support for patients and families

These independent organizations offer information and support. JBF is not affiliated with them.

Sources and further reading

  1. POEMS Syndrome and Disease Produced by Other Monoclonal Immunoglobulins
    EBMT Handbook / NCBI Bookshelf, Accessed 2026-09-05
  2. Indications for haematopoietic cell transplantation and CAR-T: 2025 EBMT practice recommendations
    EBMT / Bone Marrow Transplantation, Accessed 2026-09-05
  3. Stem Cell and Bone Marrow Transplants for Cancer
    NCI, Accessed 2026-09-05
  4. POEMS Syndrome: 2026 Update on Diagnosis, Risk-Stratification, and Management
    American Journal of Hematology (Dispenzieri A; open access, PMC13540325), 2026-07-07; accessed 2026-09-26
  5. Long-term outcome of patients with POEMS syndrome: An update of the Mayo Clinic experience (abstract)
    American Journal of Hematology (Kourelis TV, et al.), 2016; accessed 2026-09-26
  6. POEMS syndrome: definitions and long-term outcome (abstract)
    Blood (Dispenzieri A, et al.), 2003; accessed 2026-09-26
  7. Long-term outcomes after autologous stem cell transplantation for patients with POEMS syndrome (osteosclerotic myeloma): a single-center experience (abstract)
    Blood (D’Souza A, et al.), 2012; accessed 2026-09-26
  8. Plasma Cell Neoplasms (Including Multiple Myeloma) Treatment (PDQ), Health Professional Version
    National Cancer Institute, Updated 2025-04-25; accessed 2026-09-26
  9. Plasma cell disorders: HCT consultation guidelines and outcomes (NMDP/ASTCT Recommended Timing for Transplant Consultation)
    NMDP, Accessed 2026-09-26

This information explains a condition and its treatments. It cannot diagnose an illness or recommend treatment for an individual. Your care team can explain how the evidence applies to you. Written and source-checked by the Jada Bascom Foundation. Each page lists the published sources it draws on.

Ways to help

Other patients need a donor.

A transplant for POEMS syndrome usually uses the patient’s own cells, but thousands of other patients need a donor. For many of them, that donor is a stranger who joined a registry.

Join the registry

JBF points you to the official registry that serves your country. It explains who can join and what donation involves.

Support this work

Gifts to the Jada Bascom Foundation support donor-awareness education like this page, community outreach, drive planning and referrals to official registries.

Donate to JBF

Help a family find a donor

Our family guide explains practical ways to help someone who needs a donor. A registration drive can add many potential donors at once, for them and for others.

More in the library

Keep learning

Part of 2 diagnosis guides, each explaining how its subtypes fit together: Myeloma and related plasma cell disorders and Types of blood cancer.