Perfenidone and IPF.

[Flatman5]

I've just heard that the drug has been approved. Depending on the post code lottery, if you meet certain criteria it could be available in a couple of months. Fingers crossed.

[tanyamarie]

yes I saw that yesterday too and was very pleased. The lottery I think is not so much where you live to have it but catching the ipf at the right stage so that it actually does some good in stabilising the condition. I'll cross my fingers for you too!

[Flatman5 in reply to tanyamarie]

Thanks tanyamarie,

I'm no spring chicken, and at £26,000/year they'll probably think long and hard about my eligibility.

[KingoftheCocktails]

Some good news

[maggie44]

Good news for those with ideopathic pulmonary fibrosis - not suitable I was told for those like me whose PF is caused by their immune system. Always great to hear of new medications coming online to combat this horrible disease.

Maggie

[Flatman5 in reply to maggie44]

Dear Maggie44

I don't know if I will be eligible to receive the new drug, so I'll have to wait and see. I was diagnosed one year ago with moderate IPF. So far, other than oxygen, I have been prescribed nothing.

[Baldie]

I was put on Perfenidone last year as part of a trial with the drug company. Before starting I was warned that I must smother myself with factor 50 sun cream and stay out of the sun. This I did but I obviously did not put enough on my hands and they erupted in thousands of small blisters each with it's own special itch. I then started to get the rash on my head, which as you might have guessed is devoid of hair, so decided to stop it.

You also need to be careful how you take them, the course starts with 3 tabs a day building to 9 if it suits you. They must be taken with food and at regular times.

if you want to go this drug you may have a fight on your hands as I was told it costs £30000.00 a year.

I was only on them for six months so can not say if they were doing me any good but my stats from lung function tests continued to drop.

It didn't suite me but don't let that put you off it may be alright for others. Just be aware that when they say keep out of the sun they really mean it.

[Flatman5 in reply to Baldie]

Thanks Baldie,

That is really useful to know. I suspect my age may also be a factor against me. I'm 81 and I would be surprised if decisions on whether or not to use Perfenidone didn't involve cost/benefit analysis. One always hopes though.