I have been diagnosed as having IPF a... - Lung Conditions C...
I have been diagnosed as having IPF as this is a life threatening condition I was just wondering why IPF is not treated as quickly as LC
Your IPF is untreatable I was diagnosed 2 years ago had all the tests and scans and was just monitored every 2 or 3 months told there is no treatment that can help but have now gone on oxygen for use when out and about .I m still in the process of finding as much info as I can about the latest trials. They say they don't know enough about IPF but I have read about a drug PIRFENIDONE that doesn't cure but stops it progressing any further.. Its very expensive and only helpful if you are mild to moderate stage.
Hi, I'm so sorry I can't help with IPF but if you delve into this site you will find lots of info. There's a film somewhere of a recent lecture about it.
Do ring the BLF on Monday for advice - more people will add their thoughts/experiences soon.
Wishing you well, peeg
Hi JMWright, here is a link to various threads on the subject of IPF on this forum. I hope you will find something toi answer your question.
healthunlocked.com/search/b...
Sadie xx
Hi
Pirfenidone has been used by specialist centres to treat mild to moderate IPF in the last couple of years. You need to ask your Lung consultant about being referred to have this treatment. It is not a cure but has been shown to slow the progress of the disease. Presume it is better to get this treatment sooner rather than later. I know both Royal Brompton in London and Papworth hospital in Cambridge use this treatment - probably other hospitals also.
Maggie
Meant to add this from National Action for treatment of ILD and IPF
'There are a number of NHS Trusts that have been granted approval by NHS England to prescribe Pirfenidone from July 2013, however, this is a dynamic process and it may be updated over the coming months. Those hospitals currently prescribing Pirfenidone may eventually become Specialist ILD Centres but that is by no means certain. Not all hospitals can prescribe Pirfenidone – please refer to the table below to find out which hospitals can prescirbe Pirfenidone.
Hospitals currently permitted to prescribe Pirfenidone (as of May 2013)
Senate Areas
Manchester & North
West UH of South Manchester NHS Foundation Trust
Cheshire and Mersey
Aintree NHS Foundation Trust
East of England
Papworth Hospital NHS Foundation Trust
London South Guys,
King’s, St Thomas’ Hospital NHS Foundation Trust
London North East
London North West
Royal Brompton NHS Foundation Trust
Imperial Healthcare NHS Foundation Trust
North East
Newcastle NHS FT
East Midlands
UH Leicester NHS Trust
Nottingham UH NHS Trust
South East Coast
South West
North Bristol NHS Trust
Royal Devon and Exeter NHS Foundation Trust
Thames Valley
Oxford UH NHS Trust
Yorkshire and Humber
Leeds Teaching Hospital NHS Trust
Sheffield UH NHS Trust
Wessex
UH Southampton NHS Foundation Trust
West Midlands
UH Birmingham NHS Foundation Trust
The situation is different in Scotland and Wales but it is likely that Glasgow, Edinburgh and Cardiff will be regarded as ILD Centres on the basis of current NICE Criteria.'
Maggie
Sorry I haven't been on the site recently so missed your post until now. I have had IPF for 3 years now and am still smiling and as stubborn as ever! I would recommend that you have a look at this site which contains links to various other useful sites pulmonaryfibrosis.org.uk/ . Also you may like to have a look at the Nice guidelines which also give as much information as is currently available (I think). publications.nice.org.uk/id.... Once you have had a look through those if I can be of any further help please just ask. 
