Signs and symptoms documented in Acute Porphyria

In some cases, particularly those without proper diagnosis and treatment, the disease 

can potentially cause life-threatening complications. The mortality rate used to be 66%

before the discovery of  treating attacks with Glucose and hemin, it is now much lower

and estimated at 1-20% for untreated and undiagnosed attacks.

It was thought before that patients only had acute "attacks" or crisis, it is now known

that 30%of all patients have chronic signs and symptoms. 

*Pain (extreme caution which is very extreme and can be in the abdomen, or head,

neck, chest, back, legs, or arms).


*Hypertension (can be labile or chronic)

*Constipation (this can be chronic)

or diarrhea  caution Ileus may occur

*Hyponatremia (be careful and screen for SIADH) 



*Muscle weakness (caution can be severe and cause respiratory insufficiency)

*In HCP, VP, and a variant of AIP called Chester porphyria, the skin may have blistering

(In VP these can be very large), peeling, millia, scarring of skin which can present as

hypopigmentation or hyperpimentation, fragility, itching, sores, particularly on sun

exposed areas such as the face, and backs of hands, but can occur anywhere, and

may have sun sensitivity. 

*Mental symptoms (extreme anxiety, depression, hallucinations, disorientation, confusion,

paranoia, argumentative, and severe encephalopathy can occur)

*Peripheral Neuropathy

*Seizures (please see not all seizures are the tonic clonic grand mal variety) 

*Cranial nerve palsies

*Insomnia or hypersomnia

*Temporary Vision loss


*Hyperventilation or Hypoventilation

*Respiratory insufficiency 

*Urine may be dark (cola colored, bright red, red wine colored, whiskey colored,

or orange,

or darken when exposed for up to 72 hours to heat light and air)

Urine also may not be dark, or not darken at all. 

*Elevated AST and or ALT

*Sweating or no sweating at all

*Dizziness (orthostatic hypertension is documented)

*Adrenal medullary hyperplasia

*Urinary retention

*Myclonic seizures

*Status Epilepticus extreme caution

*Elevated white blood cells

*Elevated Anti nuclear antibodies

*Elevated prolactin

*Myclonic seizures

*Status Epilepticus extreme caution

*Elevated white blood cells

*Elevated Anti nuclear antibodies

*Elevated prolactin