Inclusion Body Myositis

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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).

What is it like to have 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, insomnia, fatigue, and pain) regardless of condition.
Last updated:

What do patients take to treat Inclusion Body Myositis and its symptoms?

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

(APO-Nortriptyline, Allegron, Aventyl) 6 more
Type
Prescription Drug
How many have tried
1
Tried for
Pain (1)
Treatment name(s)

(Benexol B12, Berthyco, Costco Sublingual B12) 9 more
Type
Supplement
How many have tried
1
Tried for
Fatigue (1)

Data from patients with Inclusion Body Myositis, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Compare treatments for Inclusion Body Myositis

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Treatment name(s)

(APO-Nortriptyline, Allegron, Aventyl) 6 more
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Sleepiness
How many evaluations
1
Tried for
Pain (1)
Treatment name(s)

(Benexol B12, Berthyco, Costco Sublingual B12) 9 more
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Fatigue (1)

Data from patients with Inclusion Body Myositis, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Inclusion Body Myositis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 1
30s 0
40s 0
50s 9
60s 15
70+ 10

Gender

Distribution of females vs. males

62% Females
38% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 0
20-29 years 0
30-39 years 3
40-49 years 4
50-59 years 8
60-69 years 5
70+ years 1

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 24
Not Diagnosed 1

These charts show data from Inclusion Body Myositis patients who have completed their condition history
Last updated: