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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.
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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  (230KB)
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
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 (239KB)
WMIC Porphyria Bulletin User Survey  (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 (230KB)
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.
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