Outline map of Wales and link to home page

Canolfan Gwybodaeth Meddyginiaethau Cymru
Welsh Medicines Information Centre
Ysbyty Athrofaol Cymru, Parc Y Mynydd Bychan, Caerdydd, CF14 4XW
University Hospital of Wales, Heath Park, Cardiff, CF14 4XW

 31 10 2014

 

 

Porphyria Information Service

The Welsh Medicines Information Centre (WMIC) offers a specialist advisory service on the safe use of drugs in porphyria.

The Porphyria Information service is provided in conjunction with the Porphyria Service provided by the Department of Biochemistry and Immunology, University Hospital of Wales.

What is Porphyria?

Porphyria is a rare genetic condition that can be passed through families. The porphyrias are a group of disorders of the “haem biosynthesis pathway”.

Briefly...

Haemoglobin, which carries oxygen around the body in the blood, is made in the liver. Haemoglobin is formed as a result of a series of chemical reactions called the "haem biosynthesis pathway”. Each stage of the pathway is controlled by a specific enzyme. All porphyrias result from partial deficiency of one of the enzymes of the haem biosynthesis pathway.

This can lead to a build-up of chemicals which cannot be processed efficiently by the defective enzyme. This can sometimes cause acute attacks of porphyria.

Acute attacks are often provoked by drugs, alcohol, and hormonal changes. Infections and stressful situations may also precipitate an acute attack. Rarely an acute attack may be life-threatening.

For more detailed information see the sections below resources for patients and resources for healthcare professionals.

Return to TOP

Why can drugs be problematic?

Many drugs, particularly those that induce cytochrome P450s, have long been recognised as important precipitants of acute attacks in those who inherit one of the acute porphyrias. At present there is no consensus view about the safety of many widely-used drugs; largely because of difficulty in reconciling evidence from disparate sources.

A list of drugs considered safe in the acute porphyrias has been produced jointly by the Department of Biochemistry and Immunology, University Hospital of Wales and the WMIC. You can download these from the resources for patients and resources for healthcare professionals sections below.

Return to TOP

Resources for Patients

A list of drugs considered safe in the acute porphyrias has been produced jointly by the Department of Biochemistry and Immunology, University Hospital of Wales and the WMIC. You can download this from here.

Drugs considered ‘safe’ in the acute porphyrias Porphyria Safe List-April 2014 (75KB)

European Porphyria Initiative is an informative website on porphyria that includes a section for patients and their families/carers.

The Welsh Medicines Information Centre (WMIC) offers a specialist advisory service on the safe use of drugs in porphyria to patients and healthcare professionals in the UK. The centre contact telephone number is 029 2074 2251 and fax number is 029 2074 3879.

List of the information we require to answer porphyria enquiries

Return to TOP

Resources for Healthcare Professionals

WMIC in conjunction with the Department of Biochemistry and Immunology, University Hospital of Wales, has produced an information booklet about porphyria for healthcare professionals and a list of drugs considered safe in the acute porphyrias. You can download these from here.

WMIC Porphyria Bulletin 2008 Porphyria Bulletin July 2008 (239KB)

WMIC Porphyria Bulletin User Survey User survey-Nov 2008-porphyria bulletin (39KB)
We value feedback and would welcome your comments on the WMIC Porphyria Bulletin, please complete and return as indicated.

Drugs considered ‘safe’ in the acute porphyrias Porphyria Safe List-April 2014 (75KB)

WMIC offers a specialist advisory service on the safe use of drugs in porphyria to patients and healthcare professionals in the UK. Medicines Information enquiries can be submitted by telephoning the centre on 029 2074 2251 or faxing the centre on 029 2074 3879.

List of the information we require to answer porphyria enquiries

Porphyria Links

Disclaimer: These links are provided for information only and WMIC is not responsible for the content of these sites. Views expressed on 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.

Return to TOP

 

 

 

Quick Links

Head Lice Bulletin - January 2014

Frequently Asked Questions for Healthcare Professionals - August 2011

Porphyria Safe List - April 2014

Porphyria Bulletin 2008 for healthcare professionals

Scabies - Questions and Answers - March 2012

REPORT AN ADVERSE DRUG REACTION

Yellow Card Reporting
NHS Direct Wales
Members of the public with medicines
related enquiries
should contact
NHS Direct
NHS Direct

Link to download adobe reader

   

Date this page was last modified: May 29 2014.