I have been referred to Wythenshawe Lung Centre for treatment of IPF with Pirfenidone because my condition has now fell into Nice Guidlines

[imelda16]

For this treatment does anyone have any info on what to expect I am on ambulatory 02 but may now have to use it 15 hours a day.

[Baldie]

Hello. I was one of those who took part in the trails of this drug. Unfortunately it didn't suit me. As I expect you have been told you start off on 3 tabs a day building to 9. One thing you must take great care off is to be sure to cover ALL exposed skin in a very high factor sun cream being sure to reapply on yours hands after each wash. I did not take enough care here and ended up with the must awful blistering on my hands, which was extreamly uncomfortable. I won't go into the reasons it didn't suit as they may prejudice you against it and I'm sure like me you are willing to give anything a try.

I wish luck and hope all goes well.

Remember the sun cream.

[Sooki]

Hi,I have been taking it since November,I did get up to nine a day,but recently dropped back to six,found I had lost my appetite,and was more tired,still not eating well,but I think that is down to the disease not the pirfenidone.We have not really had much sunshine so I don't know if I need sun screen,I have not used anything so far.My Dr at Papworth said it's the same dose wether you are a man or women big or small,so you need to find the right dosage for you,All in all I have had no real problems.Good luck,we need anything to slow down this awful disease.I am on ambulatory oxygen.Sooki.

[imelda16]

Thanks sooki and baldie

Your replies are most helpful and as you both say any help in treatment is better than none. I had to get all the info about this drug myself the consultant I saw at M R I for the last 2 years has not tried anything but suggested 02 for out and about. My recent tests have shown enough for me to try it and I'm aware of side effects. The thing with me is the weight loss will help as I have not lost any although my appetite isn't as good. I have under active Thyroid which has left me overweight . The sun problem will not worry me because I have to be careful as I have very fair skin and have to use sunscreen anyway. I have had to be referred to Wythenshawe because they specialize more in Lung desease so I am feeling more positive now.

[Steph57]

Hi Imelda iv'e been attending Wythenshaw for 3 yrs now you'll be in good hands it's one of the best and ask everything you want to know they're always happy to help and advice.

[imelda16]

Thanks steph 57

That's just the kind of reply I appreciate to hear about a patient that attends there I know it was an Hospital that helped those who were unlucky to get swine flue and had the best facility at the time so that sounds good. I wish my GP had referred me when my problems began which was 3 yrs ago , maybe sooner. My Asthma was masking the IPF so because of a curious Dr in the chest clinic wanting more CT scans it was picked up but I would not know others suffered this desease had it not been for the BLF and this community. I have met and known lots with lung problems even my own family with lung cancer but I hadn't spoke to anyone with IPF but now thanks to these web sights I have now.