Alkaptonuria

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  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

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What is Alkaptonuria?

Alkaptonuria is a rare autosomal recessive disorder caused by homogentisic acid oxidase deficiency, a substance that is part of tyrosine metabolism. Homogentisic acid oxidation products accumulate in and darken skin, and crystals precipitate in joints. Urine exposed to air takes on a dark color.

Common symptoms reported by people with Alkaptonuria

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:

Treatments taken by people with Alkaptonuria

You’ve tried
Treatment name(s)
Type
How many have tried
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Orfadin)
Type
Prescription Drug
How many have tried
7
Tried for
Alkaptonuria (7)
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Treatment name(s)

(Shoulder arthroplasty (left))
Type
Surgery
How many have tried
2
Tried for
Alkaptonuria (2)
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Treatment name(s)
Type
Surgery
How many have tried
2
Tried for
Alkaptonuria (2)
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Treatment name(s)

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

(Voltaren Gel)
Type
Prescription Drug
How many have tried
1
Tried for
Pain (1)
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Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
1
Tried for
Pain (1)
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Treatment name(s)
Type
Surgery
How many have tried
1
Tried for
Alkaptonuria (1)
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Treatment name(s)

(Naproxen 500)
Type
Prescription Drug
How many have tried
1
Tried for
Alkaptonuria (1) Pain (1)
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Treatment name(s)

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

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

Compare treatments taken by people with Alkaptonuria

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Orfadin)
Perceived effectiveness
for Alkaptonuria (3 evaluations)
Side effects
Facial hair is darker
How many evaluations
3
Tried for
Alkaptonuria (7)
Check to add this treatment to your profile
Treatment name(s)

(Shoulder arthroplasty (left))
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Alkaptonuria (2)
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Alkaptonuria (1 evaluation)
Side effects
Hospitalization Pain in knees
How many evaluations
1
Tried for
Alkaptonuria (2)
Check to add this treatment to your profile
Treatment name(s)

(Tylenol)
Perceived effectiveness
for Pain (3 evaluations)
Side effects
How many evaluations
3
Tried for
Pain (1)
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Alkaptonuria (1)
Check to add this treatment to your profile
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Rash on legs Weight gain
How many evaluations
1
Tried for
Pain (1)
Check to add this treatment to your profile
Treatment name(s)

(Cymbalta)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Pain (1)
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Alkaptonuria (1)
Check to add this treatment to your profile
Treatment name(s)

(Naproxen 500)
Perceived effectiveness
for Alkaptonuria (3 evaluations)
Side effects
Headaches
How many evaluations
6
Tried for
Alkaptonuria (1) Pain (1)
Check to add this treatment to your profile
Treatment name(s)

(Percocet)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Drowsiness
How many evaluations
1
Tried for
Pain (1)

Data from patients with Alkaptonuria, 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 Alkaptonuria on PatientsLikeMe?


Age
Age Proportion # of patients
<20 12
20s 17
30s 20
40s 29
50s 45
60s 26
70+ 16

Sex

Distribution of sex

49% Female
51% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 42
20-29 years 6
30-39 years 25
40-49 years 7
50-59 years 0
60-69 years 0
70+ years 0

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 99
Not Diagnosed 2

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