POEMS syndrome

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is POEMS syndrome?

POEMS stands for: Polyneuropathy (peripheral nerve damage), Organomegaly (enlargement of organs), Endocrinopathy (damage to hormone-producing glands) or Edema, M-protein (antibody) and Skin abnormalities (including hyperpigmentation). At least two of these conditions are needed for POEMS diagnosis.

Common symptoms reported by people with POEMS syndrome

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people with POEMS syndrome

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Decadron)
Type
Prescription Drug
How many have tried
1
Tried for
POEMS syndrome (1)
Treatment name(s)

(Revlimid)
Type
Prescription Drug
How many have tried
1
Tried for
POEMS syndrome (1)
Type
Prescription Drug
How many have tried
1
Tried for
POEMS syndrome (1)

Data from patients with POEMS syndrome, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with POEMS syndrome

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Decadron)
Perceived effectiveness
for POEMS syndrome (1 evaluation)
Side effects
weight gain
Total evaluations
1
Tried for
POEMS syndrome (1)
Treatment name(s)

(Revlimid)
Perceived effectiveness
for POEMS syndrome (1 evaluation)
Side effects
diarrhea fatigue 1 more
Total evaluations
1
Tried for
POEMS syndrome (1)
Perceived effectiveness
for POEMS syndrome (2 evaluations)
Side effects
constipation sleeplessness
Total evaluations
2
Tried for
POEMS syndrome (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with POEMS syndrome, who reported starting treatments within the last 5 years.
Last updated:

Who has POEMS syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 1
30s 1
40s 4
50s 3
60s 2
70+ 2
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 0
20-29 years 1
30-39 years 1
40-49 years 0
50-59 years 2
60-69 years 1
70+ years 1

Sex

Distribution of sex

77% Female
23% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 8
Not Diagnosed 2

These charts show data from POEMS syndrome patients who have completed their condition history
Last updated: