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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

 2 5 2016

 

 

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?

Why can drugs be problematic?

Resources for Patients Resources for Healthcare Professionals

Porphyria Links

Information required to answer porphyria enquiries

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.

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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.

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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 (122KB)

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

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Resources for Healthcare Professionals

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

And again in conjunction with the Department of Biochemistry and Immunology, University Hospital of Wales, WMIC 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)

Drugs considered ‘safe’ in the acute porphyrias Porphyria Safe List-April 2014 (122KB)

WMIC also produce a series of 'questions and answers' (Q&As) on medicines-related porphyria enquiries that are available to view through the NICE Evidence website:

What are the restrictions on prescribing for patients with non-acute porphyria?

What advice should be given to patients with porphyria who intend to travel?

Are topical medicines safe in people with porphyria?

How should haem arginate (human hemin) be administered in the management of acute porphyrias?

What is the most suitable treatment for acne in a patient with acute porphyria?

 

And finally, 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.

European Porphyria Initiative

Norwegian Porphyria Centre (NAPOS), in collaboration with the Swedish Porphyria Centre

Porphyria Service - Cardiff

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Quick Links

Porphyria Safe List - May 2016

Head Lice Bulletin - January 2014

REPORT AN ADVERSE DRUG REACTION

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

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Date this page was last modified: April 28 2016.