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  1. Diagnostic Testing for the Acute Porphyrias - Clarification of Testing Results

    ... not be confirmed by either biochemical or DNA testing. Biochemical testing is the demonstration of increased urinary ALA ... concern for patients who respond well to acute porphyria treatment that their treatment would be discontinued. We appreciate this ... as treatment and the pain is managed with various other medications. For more information on Panhematin® please visit:  ...

    Page - Jan 14 2017 - 9:05am

  2. Acute Intermittent Porphyria (AIP)

    ... recommend that all relatives of someone with AIP obtain testing, to determine who has the genetic trait and who does not. Those who ... .​ Treatment and Prognosis Hospitalization is often necessary for acute ... if nausea and vomiting have prevented adequate oral intake. Medications for pain, nausea and vomiting, IV hydration, and close observation ...

    Page - Jul 5 2017 - 3:37pm

  3. Hereditary Coproporphyria (HCP)

    ... as drugs that are safe ( ). The worst offenders are ...

    Page - Jul 5 2017 - 3:43pm

  4. Variegate Porphyria (VP)

    ... Documentary     **Diagnostic Testing for the Acute Porphyrias - Clarification of Testing Results** ... hemochromatosis (HFE) mutations. This porphyria responds to treatment by repeated phlebotomies to remove excess iron, or to a low-dose ...

    Page - Jul 5 2017 - 3:40pm

  5. AIP, HCP, VP & ADP

    ... handled with care and sent to a laboratory of excellence for testing and subsequent evaluation. A laboratory overseen by a Porphyria ... database of safe and unsafe drugs on this website.  Treatment During Attacks Pain can be the primary and only complaint of a ...

    Page - Jul 5 2017 - 2:50pm

  6. Emergency Room Guidelines for Acute Porphyrias

    ... initial diagnosis, common sequelae and best practices for treatment. A PowerPoint presentation (as PDF) for instruction is also ... high index of suspicion, and 2) be aware that laboratory testing is available that can readily make a diagnosis of acute porphyria or ...

    Page - Apr 18 2016 - 2:58pm

  7. ALAD-Deficiency Porphyria (ADP)

    ... aminolevulinic acid (ALA) and porphobilinogen (PBG). DNA testing to identify the specific mutation in an individual’s ... for δ-Aminolevulinic Acid Dehydratase Porphyria? Treatment is the same as in the other acute porphyrias. For the acute ... hospitalization is often necessary for acute attacks. Medications for pain, nausea and vomiting, and close observation are generally ...

    Page - Jul 29 2016 - 8:48am

  8. Steve Stevens

    ... turning dark when she was having an attack, and the only treatment she received was morphine or demerol for the pain. There was no ... is going on. He referred me to a hematologist for Porphyria testing, and the first words out of her mouth were that she thought I didn’t ...

    Member Story - Apr 19 2013 - 2:25pm

  9. Penelope Burris

    ... years of illness, we didn’t know I had AIP until my testing at St. Francis in Cape Girardeau , MO and my diagnosis at Barnes ... it, it was over and I was ready to receive my Panhematin treatment. Back in my room, I received my treatment over a three day period.  ...

    Member Story - Oct 1 2013 - 11:44am