I may be referred to receive Pirfenidone,recently approved by N.I.C.E,anyone have any experience of this drug?

[terence2]

[Sooki]

Hi,yes I have been on it since November,I am up to full dose.I do get tired more easily,and my appetite is not so good.I have had weekly blood tests for the liver and they have been fine,so I can go on to monthly now.Dont know about the photo sensitivity yet as we have not had any real sun.Hope you get on with it ok.Sooki.

[imelda16]

Please keep us posted as I am hoping to be put on it my consultant has said he will try me on it if my condition goes worse. The only other treatment on offer is transplant which I dont think I will consider at my age and the other problems ihave. It is not a cure but should stop any progression in the desease. Life has become quite limited now that I need oxygen for out and about and find it very hard to carry out the thing I used to do. Good luck.

[Hidden]

Dear Terence2, My name is Judy and I work for the BLF. It might be helpful to have a look at the BLF website about IPF / ILDs - here is the link: blf.org.uk/Conditions/D... Also, you could ring the BLF helpline and ask for information and support: 03000 030 555 to talk to some-one and request a free copy of our IPF information booklet. I hope this helps. Good luck.

[Baldie]

Hi. I was on it for a trail, it didn't suit me. Be very careful when the sun eventually comes out. I wasn't carful enough with my hands and got the most god awful rash. My hands were a mass of tiny blisters each one with with its own special itch. I hope it works for you and that you get along with it. I would be interested to know of any positive results from it as there are quite a few down sides to it. Good luck