Inclusion body myositis

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 inclusion body myositis?

Inclusion body myositis (IBM) is an inflammatory muscle disease, characterized by slowly progressive weakness and wasting of muscles, most apparent in the muscles of the arms and legs. There are two types: sporadic inclusion body myositis (sIBM) and hereditary inclusion body myopathy (hIBM).

Common symptoms reported by people with inclusion body myositis

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 inclusion body myositis

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

(Lexapro)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)

Data from patients with inclusion body myositis, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with inclusion body myositis

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

(Lexapro)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with inclusion body myositis, who reported starting treatments within the last 5 years.
Last updated:

Who has inclusion body myositis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 2
30s 2
40s 1
50s 17
60s 32
70+ 45
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 0
20-29 years 0
30-39 years 4
40-49 years 5
50-59 years 12
60-69 years 6
70+ years 4

Distribution of sex

Sex
Sex Proportion # of patients
Male 53
Female 44

Types
Condition Types Proportion # of patients
Hereditary inclusion body myopathy (hIBM) 2
Sporadic inclusion body myositis (sIBM) 22
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 39
Not Diagnosed 1

These charts show data from inclusion body myositis patients who have completed their condition history
Last updated: