Hello, I've just been diagnosed with IPF, and that I'm going to start treatment with PIRFENIDONE in the next few days. Any advise

[dylowen]

[phillips1]

Hiya Dylowen. Have a read through the following link, it might help a bit.

en.wikipedia.org/wiki/Pirfe...

Bobby

[dylowen in reply to phillips1]

Bobby-Thanks for reply, I've checked it out thanks again dylowen

[Sohara]

Thought this might be of interest to you Dylowen

dailymail.co.uk/health/arti...

[dylowen in reply to Sohara]

Thank Sohara very interesting dylowen

[imelda16]

Hi dylowen

I have IPF and will be starting Pirfenidone in August it was my choice the consultant was going to start me on it now but the specialest nurse who will monitor me on it explained the sun sensitify side effect. Because I am quite fair and have always needed to take care it seemed leaving it 3 month would be better. I was given 2 advice booklets one about IPF the other about Pirfenidone treatment which has been very helpful .When I start taking it I will be offered group therapy to attend with others who are being treated.So that all seems good to me .Good Luck

[dylowen]

Hi Imelda

Thanks for the reply. Are the booklets you rec'd NHS publications? I haven't been offered anything yet, but I see a specialist respiratory nurse next week-perhaps I'll get them then. GOOD LUCK

[imelda16 in reply to dylowen]

Hi dylowen

The booklets are provided by Intermune Uk & I Ltd and are a Guide for patient s with IPF one about the desease the other is information on the drug and side affects. So I would imagine you will get yours when you see the nurse it is the first real advice that I have received in 3 years so it sounds we are being helped at last. If you don't get any booklets mention it to them the problem with IPF not even GPs know a great deal.

[dylowen in reply to imelda16]

Thanks again,I'll mention it to the nurse next week