Myositis

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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)

(Deltasone)
Type
Prescription Drug
How many have tried
7
Tried for
myositis (7)
Treatment name(s)

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

(BuTrans Transdermal Patch)
Type
Prescription Drug
How many have tried
2
Tried for
Pain (2)
Treatment name(s)

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

(Myofascial release)
Type
Physical Therapy
How many have tried
2
Tried for
Pain (2)
Treatment name(s)

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
2
Tried for
myositis (2)
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Type
Procedures
How many have tried
1
Tried for
Pain (1)
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
1
Tried for
fatigue (1)
Treatment name(s)

(Essential Oils)
Type
Procedures
How many have tried
1
Tried for
stress (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)

(Deltasone)
Perceived effectiveness
for myositis (3 evaluations)
Side effects
constipation Cushing's syndrome 13 more
Total evaluations
9
Tried for
myositis (7)
Treatment name(s)

(Imuran)
Perceived effectiveness
for myositis (1 evaluation)
Side effects
hair loss
Total evaluations
1
Tried for
myositis (2)
Treatment name(s)

(BuTrans Transdermal Patch)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
Pain (2)
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)

(Myofascial release)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
soreness
Total evaluations
1
Tried for
Pain (2)
Treatment name(s)

(Home Physical Therapy)
Perceived effectiveness
No evaluations
Side effects
Pain
Total evaluations
1
Tried for
myositis (2)
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Perceived effectiveness
No evaluations
Side effects
soreness
Total evaluations
1
Tried for
Pain (1)
Treatment name(s)

(Xanax)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue (1)
Treatment name(s)

(Essential Oils)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
stress (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?


Age
Age Proportion # of patients
<20 1
20s 6
30s 19
40s 40
50s 41
60s 17
70+ 8
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 7
20-29 years 9
30-39 years 16
40-49 years 22
50-59 years 9
60-69 years 1
70+ years 0

Sex

Distribution of sex

87% Female
13% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 72
Not Diagnosed 8

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