Home | UKMI Activities | Specialist Services | Drugs in porphyria

Specialist Services | Drugs in porphyria

Drugs in porphyria

Porphyria Information Service

Introduction 

The Welsh Medicines Information Centre (WMIC) in Cardiff offers a specialist advisory service on the safe use of medicines in porphyria. The UK Porphyria Medicines Information Service (UKPMIS) is provided in conjunction with the Cardiff Porphyria Service provided by the department of Biochemistry and Immunology, University Hospital of Wales. This service is part of the National Acute Porphyria Service (NAPS).  NAPS was commissioned in April 2012 by the NHS Advisory Group for National Specialised Services (AGNSS) and includes support for the Porphyria Information Service and annual review and production of the Porphyria Safe List available at:

https://www.wmic.wales.nhs.uk/wp-content/uploads/2017/06/2017-poprhyria-safe-list-FINAL.pdf

Who can use the service? 

The Porphyria Information Service is provided to all healthcare professionals and patients with porphyria in the UK.  We cannot answer specific enquiries for non-UK residents, however we can signpost enquirers to useful information sources locally and websites about medicines use in porphyria that may help answer their questions.

 

What types of enquiry do we answer? 

We are able to answer enquiries about the safety of medicines used in patients with porphyria.  We are unable to comment on the suitability of specific treatments with regards to concomitant medical conditions or interactions with other medicines.  Enquiries of this nature will be directed to local Medicines Information Centres. 

 

How to contact WMIC

Enquiries can be made by:

Telephone: 029 20742251 or 029 20742979

Fax: 029 20743879

Post: UK Porphyria Medicines Information Service (UKPMIS), Welsh Medicines Information Centre, Pharmacy Department, University Hospital of Wales, Heath Park, Cardiff, CF14 4XW. 

Due to data protection regulations, we are unable to supply patient-specific information via email.  

Our opening hours are Monday – Friday 8.45am – 5.30pm and Saturday 9am – 12.45pm. 

Before contacting us, please refer to section below titled ‘information required to answer a porphyria enquiry’. 

 

Information required to answer a porphyria enquiry 

In order for us to answer a porphyria enquiry, please provide us with the following information where possible:

  • Patient’s name
  • Sex of patient
  • Age of patient
  • Type of porphyria:
    • Acute Intermittent
    • Hereditary Coproporphyria
    • Variegate Porphyria
    • Erythropoietic Protoporphyria
    • Porphyria Cutanea Tarda
    • Unknown
  • Nature of illness i.e. active or latent
  • History of drug induced attacks
  • Condition being treated
  • Which medication you would like to use

 

Guidance

 

WMIC has prepared the following documents:

     

In conjunction with the Department of Biochemistry and Immunology, University Hospital of Wales, WMIC has recently had two articles published in the Adverse Drug Reaction Bulletin on safe prescribing in the acute porphyrias:

Lockett CD and Badminton MN.  Safe prescribing in the autosomal dominant acute porphyrias: a practical approach: Part I. Adverse Drug Reaction Bulletin.  August 2015; No. 293: pp. 1131 – 1134
Lockett CD and Badminton MN.  Safe prescribing in the autosomal dominant acute porphyrias: a practical approach: Part II. Adverse Drug Reaction Bulletin.  October 2015; No. 294: pp. 1135 – 1138

     

     Sources of Information

     

    Disclaimer: These links are provided for information only and WMIC is not responsible for the content of all of these sites. Views expressed on some of these sites are the views of the site owners and do not necessarily represent the views of WMIC or the Department of Biochemistry and Immunology, University Hospital of Wales.