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What is it like to have Acute Intermittent Porphyria?

Common symptoms	How bad it is	What people are taking for it
Severity Severe Moderate Mild None
Anxious mood	0 (0%) patients experienced severe severity 2 (14%) patients experienced moderate severity 7 (50%) patients experienced mild severity 5 (36%) patients experienced no severity	Diazepam, Promethazine, Lorazepam
Insomnia	2 (13%) patients experienced severe severity 3 (20%) patients experienced moderate severity 8 (53%) patients experienced mild severity 2 (13%) patients experienced no severity	Promethazine
Fatigue	4 (25%) patients experienced severe severity 4 (25%) patients experienced moderate severity 8 (50%) patients experienced mild severity 0 (0%) patients experienced no severity	Modafinil
Depressed mood	0 (0%) patients experienced severe severity 2 (13%) patients experienced moderate severity 5 (33%) patients experienced mild severity 8 (53%) patients experienced no severity	Nothing reported yet
Pain	4 (25%) patients experienced severe severity 7 (44%) patients experienced moderate severity 3 (19%) patients experienced mild severity 2 (13%) patients experienced no severity	Tramadol, Pain management, Acetaminophen (Paracetamol)

What do patients take to treat Acute Intermittent Porphyria and its symptoms?

Treatments reported by members	Perceived effectiveness	Overall rating of side effects	# of Evaluations
Hemin	0 (NaN%) experienced major perceived effectiveness 0 (NaN%) experienced moderate perceived effectiveness 0 (NaN%) experienced slight perceived effectiveness 0 (NaN%) experienced no perceived effectiveness 0 (NaN%) could not tell	0 (NaN%) experienced severe side effects 0 (NaN%) experienced moderate side effects 0 (NaN%) experienced mild side effects 0 (NaN%) experienced no side effects	0
Leuprolide (Lupron, Eligard, Lucrin, Lupron Depot-Gyn)	0 (NaN%) experienced major perceived effectiveness 0 (NaN%) experienced moderate perceived effectiveness 0 (NaN%) experienced slight perceived effectiveness 0 (NaN%) experienced no perceived effectiveness 0 (NaN%) could not tell	0 (NaN%) experienced severe side effects 0 (NaN%) experienced moderate side effects 0 (NaN%) experienced mild side effects 0 (NaN%) experienced no side effects	0

These charts show data from Acute Intermittent Porphyria patients' latest treatment evaluations

Who has Acute Intermittent Porphyria at PatientsLikeMe?

24 patients have this condition
0 New patients joined this month
15 say Acute Intermittent Porphyria is their primary condition

<20	20s	30s	40s	50s	60s	70+
Current Age
0 patients	2 patients	7 patients	6 patients	5 patients	1 patients	1 patients

Distribution of females vs. males
Gender
77%	Females
23%	Males

Age at first symptom
Age at first symptom	# of patients	Proportion
0-19 years	8	8
20-29 years	6	6
30-39 years	1	1
40-49 years	1	1
50-59 years	1	1
60-69 years	0	0
70+ years	0	0

Diagnosis status
Diagnosis status	# of patients	Proportion
Diagnosed	16	16
Not Diagnosed	3	3

These charts show data from Acute Intermittent Porphyria patients who have completed their condition history

Find patients just like you Patients with Acute Intermittent Porphyria

Where do I talk to patients with Acute Intermittent Porphyria?

Endocrine, Metabolism and Nutrition Forum

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1k+ posts | 178 topics

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Last updated: May 25, 2013