Pyroluria 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 pyroluria syndrome?

Pyroluria Syndrome is characterized as an abnormality in hemoglobin synthesis resulting in an excretion of pyrrole compound in the urine. This may be associated with other mental and physical conditions. There is a lack of agreement about this condition within the medical community.

Common symptoms reported by people with pyroluria 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 pyroluria syndrome

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Type
Supplement
How many have tried
2
Tried for
pyroluria syndrome (2)
Treatment name(s)

(Finest Natural B-6)
Type
Supplement
How many have tried
2
Tried for
pyroluria syndrome (2)
Treatment name(s)

(Excedrin Migraine)
Type
Over the Counter Drug
How many have tried
1
Tried for
fatigue (1)
Treatment name(s)

(Tylenol)
Type
Over the Counter Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

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

(Cal-600)
Type
Supplement
How many have tried
1
Tried for
pyroluria syndrome (1)
Treatment name(s)

(Calcium, Magnesium and Zinc Rub)
Type
Supplement
How many have tried
1
Tried for
pyroluria syndrome (1)
Treatment name(s)

(Marijuana)
Type
Other
How many have tried
1
Tried for
pain (1)
Treatment name(s)

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

(Omega 6 Evening Primrose)
Type
Supplement
How many have tried
1
Tried for
pyroluria syndrome (1)

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

Compare treatments taken by people with pyroluria syndrome

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)
Perceived effectiveness
for pyroluria syndrome (2 evaluations)
Side effects
Total evaluations
2
Tried for
pyroluria syndrome (2)
Treatment name(s)

(Finest Natural B-6)
Perceived effectiveness
for pyroluria syndrome (2 evaluations)
Side effects
Total evaluations
2
Tried for
pyroluria syndrome (2)
Treatment name(s)

(Excedrin Migraine)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
Total evaluations
2
Tried for
fatigue (1)
Treatment name(s)

(Tylenol)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (2 evaluations)
Side effects
sinus tachycardia
Total evaluations
2
Tried for
fatigue (1)
Treatment name(s)

(Cal-600)
Perceived effectiveness
for pyroluria syndrome (2 evaluations)
Side effects
Total evaluations
2
Tried for
pyroluria syndrome (1)
Treatment name(s)

(Calcium, Magnesium and Zinc Rub)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pyroluria syndrome (1)
Treatment name(s)

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

(Flexeril)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(Omega 6 Evening Primrose)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pyroluria syndrome (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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

Who has pyroluria syndrome on PatientsLikeMe?


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

Distribution of sex

Sex
Sex Proportion # of patients
Male 2
Female 7

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5
Not Diagnosed 1

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