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 myositis?

Myositis is a general term that means inflammation of the muscles. It may be associated with inflammation in other organs, including the joints, heart, lungs, intestines and skin.

Common symptoms reported by people with 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 myositis

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

(Flexeril)
Type
Prescription Drug
How many have tried
2
Tried for
myositis (1) pain (1)
Treatment name(s)

(Imuran)
Type
Prescription Drug
How many have tried
1
Tried for
myositis (1)
Treatment name(s)

(BuTrans patch)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Type
Psychotherapy
How many have tried
1
Tried for
stress (1)
Treatment name(s)

(Gammaglobulin (IVIg))
Type
Prescription Drug
How many have tried
1
Tried for
myositis (1)
Treatment name(s)

(Trexall)
Type
Prescription Drug
How many have tried
1
Tried for
myositis (1)
Treatment name(s)

(Solu-Medrol Infusion)
Type
Prescription Drug
How many have tried
1
Tried for
myositis (1)
Treatment name(s)

(Morphine ER)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Oxycodone IR)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Percocet)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

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

Compare treatments taken by people with myositis

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

(Flexeril)
Perceived effectiveness
for pain (1 evaluation)
Side effects
drowsiness migraine
Total evaluations
1
Tried for
myositis (1) pain (1)
Treatment name(s)

(Imuran)
Perceived effectiveness
for myositis (1 evaluation)
Side effects
hair loss
Total evaluations
1
Tried for
myositis (1)
Treatment name(s)

(BuTrans patch)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Perceived effectiveness
for stress (1 evaluation)
Side effects
Total evaluations
1
Tried for
stress (1)
Treatment name(s)

(Gammaglobulin (IVIg))
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
myositis (1)
Treatment name(s)

(Trexall)
Perceived effectiveness
for myositis (1 evaluation)
Side effects
cold chills fatigue 1 more
Total evaluations
2
Tried for
myositis (1)
Treatment name(s)

(Solu-Medrol Infusion)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
myositis (1)
Treatment name(s)

(Morphine ER)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Oxycodone IR)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Percocet)
Perceived effectiveness
for pain (1 evaluation)
Side effects
constipation
Total evaluations
2
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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

Who has myositis on PatientsLikeMe?

  • 0 new patients joined this month
  • 40 say myositis is their primary condition

Age
Age Proportion # of patients
<20 2
20s 5
30s 16
40s 44
50s 48
60s 27
70+ 11
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 8
20-29 years 10
30-39 years 16
40-49 years 25
50-59 years 10
60-69 years 2
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 20
Female 135

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 83
Not Diagnosed 9

These charts show data from myositis patients who have completed their condition history
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