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Porhyria Association - incorporating PEGS Porhyria Association - incorporating PEGS Porhyria Association - incorporating PEGS Porhyria Association - incorporating PEGS
Porhyria Association - incorporating PEGS Porhyria Association - incorporating PEGS Porhyria Association - incorporating PEGS Porhyria Association - incorporating PEGS
Porhyria Association - incorporating PEGS Porhyria Association - incorporating PEGS Porhyria Association - incorporating PEGS


Porhyria Association - incorporating PEGS

Acute attacks: treatment.

10% glucose and then Normosang haemarginate are the recommended treatments for an acute attack of porphyria, as outlined in all the recent treatment journal articles.

The product is human heme from Finland with arginine. The alternative haematin is considered inferior and only used in countries where Normosang haemarginate is not available.

The instructions for giving haemarginate are specific and come in the packaging. We have seen it given over four days in a hospital through a central line. The haemarginate goes in for half hour per day, at the same time each day, with glucose the other 23 and 1/2 hours. The line is flushed before and after with normal saline.

Unfortunately, the process in Australia for obtaining Normosang haemarginate is less than simple. It is currently an Unapproved Therapeutic Good, requiring application via the Special Access Scheme (SAS). This PDF file gives a complete overview of the SAS scheme.

The steps are:

  1. Download the SAS Category B form.
  2. Fill it in and send it to:

    The Medical Offficer, SAS
    Phone: (02) 6232 8111
    Fax: (02) 6232 8112
    Drug Safety and Evaluation Branch
    Therapeutic Goods Administration
    Po Box 100
    Woden ACT 2606