POEMS syndrome

POEMS syndrome is a rare condition caused by the body making abnormal plasma cells. Plasma cells are a type of white blood cell that normally help your body fight infections. When these cells don’t work properly, they can affect how the body works.

The name comes from the five common features of the syndrome:

P – Polyneuropathy: nerve damage causing weakness, numbness and pain

O – Organomegaly: enlarged organs such as the spleen or liver

E – Endocrinopathy: hormone problems

M – Monoclonal plasma cell disorder: too many abnormal plasma cells, causing issues with the whole body

S – Skin changes: darker skin, red spots, more hair growth, nail changes, or swelling

To learn more about POEMS syndrome, you may find this short video helpful.

To help us diagnose your condition and plan the best treatment, you will have some tests. These may include:

• bone marrow biopsy – to check your plasma cells 
• PET CT scan – to look for abnormal areas in your body
• nerve conduction study – to check how well your nerves are working
• lumber puncture – to test the fluid around your brain and spine
• blood tests – including VEGF (a marker that is often high in POEMS syndrome) 

Once we have your test results, we will invite you to the clinic to discuss them with you. You are welcome to bring a friend, family member or carer to the appointment.

We know that waiting for test results can be stressful. If you’d like someone to talk to about your worries, you can contact the UCLH Support and Information Service. They can support you in person, or by phone or email.

Our team includes: 

• specialist doctors  
• clinical nurse specialists 
• neurophysiology staff – specialists who carry out tests that check how well your nerves, muscles and brain are working 
• neurorehabilitation services staff – including physiotherapists, occupational therapists, psychologists and orthotists (who provide and fit supports or footwear to help you move more comfortably) 
• expert diagnostic laboratory staff 

You may also meet other healthcare professionals during your care, such as: 

• pharmacists – experts in medicines, including how drugs work, how they interact, and how they should be used safely 
• neurologists – doctors who specialise in diagnosing and treating conditions affecting the nerves, muscles and brain 
• endocrinologist – doctors specialising in hormone issues 
• dermatologists – doctors specialising in skin conditions 

Visit out Meet the blood conditions team page to find out more about the people involved in your care. 

The team caring for you is called a multidisciplinary team (MDT) because it includes experts from different areas of medicine and care. The MDT meets regularly to discuss each patient’s diagnosis and treatment plan. They make sure every patient receives the best care, with the right tests and treatment. You can find out more about how the team supports you on our plasma cell MDT page.  

You will have a main consultant who oversees your care. During your visits, you may also see other doctors in the team. You can ask to see a specific doctor, but this may not always be possible with the way the clinic is scheduled. All our doctors work closely together to provide you with the best treatment and care. 

If you need to stay in hospital, the ward’s specialist myeloma team will care for you. They will work closely with experts from the haematology team.  

Role of clinical nurse specialists  

Clinical nurse specialists (CNSs) are here to support you. They: 

• are your main contact for any questions or concerns 
• give you clear information about your diagnosis, tests and treatment 
• offer emotional support to you and your family throughout your care  
• advise on how to manage at home  
• talk with you about any side effects, health worries or medicines you take     
• work closely with your healthcare team to coordinate your care in hospital and at home    
• refer you and your family to support services, such as psychology, complementary therapy, or help with benefits   

Outpatient appointments take place at the UCH Macmillan Cancer Centre on the following days:

• every Wednesday 
• one Monday a month 

Please remember that you are welcome to bring a friend, family member or carer to your appointments.

If suitable, we may offer you a phone appointment instead of asking you to come to the hospital. We will let you know in advance if you will have a phone appointment.

You can view your appointment details and clinic letters on our patient portal, MyCare UCLH. If you have any trouble signing up, your CNS can help you.

Blood tests 

You should have a blood test before any follow-up clinic appointment. This is to make sure that we have all the information we need to assess your condition and plan your treatment.

If your appointment is at the Cancer Centre, you can have your blood test on the day of your appointment, on the lower ground floor of the Cancer Centre. If you have a phone appointment, you should have your blood test a couple of days before. We will talk to you about this in more detail.

You can book your blood test using a system called Swiftqueue. If you have any problems with using the system, speak to your CNS.

There are a range of treatments available for POEMS syndrome. The treatments usually include chemotherapy drugs, targeted therapies or a combination of both. Many of these treatments are similar to those used for myeloma. Your healthcare team will explain your treatment plan during your clinic appointment. 

Where will I have my treatment? 

You may have your treatment in chemotherapy daycare, as an inpatient on a hospital ward or at home. Where you have your treatment will depend on the type of treatment you have and your individual needs. Your CNS will talk to you about what is best for you. 

Managing side effects of treatments 

Your CNS will explain the common side effects of your treatment and give you personalised advice on how to manage them.

Your follow-up may include in-person or phone appointments with your doctor or CNS. They will give you your individual follow-up plan. 

Consent 
Consenting to treatment 

Diet and exercise advice 
Diet and exercise (although this information is written for people with myeloma, it is also useful for people diagnosed with POEMS syndrome) 
Safer eating during cancer treatment 

Financial advice
Benefits and financial support info sheet (although this information is written for people with myeloma, it is also useful for people diagnosed with POEMS syndrome) 
UCLH Welfare and benefits advice 

Support during your care 
UCLH Macmillan Support and Information Service 
UCLH POEMS support group 

Travel advice 
Patient Transport Service 
Travelling to your hospital appointment 

Information on the diagnosis and management of POEMS syndrome is available in the following resources:

• Comprehensive diagnosis and management of POEMS syndrome
• Evidence-based medical treatment of POEMS syndrome