Please help: Pirfenidone

[amummy]

My daughter in her 20s has IPPFE and has been told that Pirfenidone may help her delay the progression. It can not be prescribed for her condition as not proven to help as so rare a condition.

Pirfenidone can be bought on line form regulated sites with a prescription which we can not get. We are living a nightmare knowing there is a drug that may help her to live, that we are willing to pay for yet can not get a prescription for. We are scared to buy from unregulated on line site as may be harmful.

Can anyone help. How can we get Pirfenidone. Grasping at straws, living in hope.x

[Kelly043]

I also suffer from IPF , and am under the Brompton I asked about this and was told no I don't have the right kind of IPF . If you have any luck can you let me know please .

[cofdrop-UK]

OMG I am so sorry to hear this. Good advice from flib - certainly worth going to RBH if at all possible.

You may find it helpful to telephone BLF (click red balloon above for number) to speak to one of their supportive nurses.

Wishing you and your dear daughter the very best.

love cx

[Suzy6]

Sorry I can be of no help at all. flibberti and cofdrop always give good advice.

I just want to wish you and your daughter the best of luck in your quest.

Suzyxxx

[Hidden]

Hi looking on the link flibberti provided I found this

Pirfenidone

This is the only licenced treatment for IPF. In clinical trials, it has been shown to reduce the rate of decline in lung function (FVC and TLCO) in people with mild to moderate IPF. It has now been approved by NICE for individuals with mild to moderate IPF, according to lung function criteria. For further information on pirfenidone, please click here to download a PDF by the National Institute for Health and Care Excellence.

The ASCEND study has just reported further beneficial effect of Pirfenidone on lung function in patients with mild to moderate IPF. This is extremely encouraging.

It looks like it is available? x

[jenss in reply to Hidden]

Hi cough, yes it is available for IPF diagnosis only not other lung conditions even though they may also involve lung scarring. The daughter has Idiopathic Pleuroparenchymal Fibroelastosis (IPPFE) which is not IPF, hence it seems the dr cannot prescribe it (would have to prescribe off-label, then it would have to be paid for privately and it is very expensive, and dr may not want to take the risk if not approved for this condition). Best wishesxxxx

[Hidden in reply to jenss]

Oops sorry. Thanks for the correction jenss x

[jenss]

Hi there, what a terrible situation I am so sorry to hear this. Please do as Flibberti suggested and make sure you see an ILD expert centre like the Brompton. ILD is such a complex disease that only experts can help. Maybe she could be part of a clinical trial or they could put a special request to the drug company to supply it at reduced or no cost to her for a non-indicated condition. Let us know how you go and good luckxxx

[Hidden]

Do you have what is called "Compassionate Use" there? In the states you can apply to drug companies to use their meds that are not quite approved yet, but have indications that they can be useful, under compassionate use. May be worth a try? Praying for answers for you!!

[stilltruckin]

This is a trustworthy site that doesn't require a prescription. I've used it to access a number of pharmaceuticals over the last few years: unitedpharmacies-uk.md/prod...

( FAQs here: unitedpharmacies-uk.md/FAQ_... )