New drug for IPF

Hi everyone, On this site recently someone mentioned an article in the Daily Express? about a doctor in Edinburgh who was developing a new drug for IPF. I mentioned it to my consultant and he said to send it to him and now I can't find it! Can the person who mentioned it get back to me please. I have a good consultant who really takes things on board but you would think they would have the information before us. This site is wonderful. Merry Christmas to you all. Popplewell

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  • Hi Poppywell, Please keep us updated, Matt

  • Hi mattcass, I certainly will if I can get the information about the article. I will try the daily express again myself. Perhaps I was putting in the wrong info. A firm in America called Promidior has come up with a drug too but no good to us here I don't suppose. I will keep looking. Popplewell

  • Can't find the newspaper article but was it to do with this? eurekalert.org/pub_releases...

    ipftoday.com/news has a list of other IPF news and articles too. :-)

  • Hi mapal, No I am sorry that wasn't the article. Somebody will pop up with the answer I am sure. It was about a doctor in Edinburgh who has come up with a new drug, very similar to the one found by Promidior in USA, which I thought would be more usefull to us in the UK although these things take a long time to seep through. We keep hoping don't we? My consultant said that everything else tried, hadn't worked but this drug I read about treated IPF in a different way. There will be a breakthrough some day I am sure. Popplewell

  • POPPLEWELL

    The latest drug I read about was PIRFENIDONE which has now been passed by NICE . It is not a cure but will stop the progress of this horrible decease which I too suffer from My consultant has heard of this drug and says he will help me but at the moment its not progressing so I have ambulatory oxygen for when out and about. I am not sure how bad you have to be to get this drug but he has made a note of my request and will keep me up to date..

  • Hi imelda, I have spoken to my consultant about pirfenidone but he says there are lots of side effects. I used to know an Imelda, what a nice name. popplewell

  • Thanks for compliment popplewell had that name for 73yrs and hope I get to 80 at least so will be willing to try any new drug that may help . My consultant didn,t go into any side effects but I have not had any treatment so far apart from Pulmonary rehab and scans , lung function but not even the oxygen makes much difference. Cake sounds good now start the mince pies and HAPPY XMAS.

  • i see Nik Hiranni in 3 weeks time in Edinburgh he is my Consultant I will interrogate him till he tells me then i will pass it on.Matt

  • Brilliant doctor. We're lucky to see him.

  • Morning Popplewell, I just wrote 'new drug for IPF' in the BLF search bar, top right and quite a few interesting old posts came up.

    Good luck with your search xx P

  • Hi peeg, Thanks for reply. Looked at the site you mentioned but I get the feeling that at 80 I am just too old and too far 'gone' to be taken on with anything new. We have to keep trying though don't we. Just managed to marzipan my Christmas cake with special effort and have bought 'slap on' icing for tomorrow's job so getting there slowly! Merry Christmas to all. Popplewell

  • I don't know about too far gone Popplewell! So many folks go on to 100 with all sorts of ailments. Sometimes I think if I look after myself too well I could have 40 odd years to go!! (Oh dear oh dear, perish the thought).

    Happy icing :)

    luckily my lot don't like the traditional Christmas foods so I'm off the hook on that score?

    Only problem tho is my French almost daughter in law is excited about her 1st real English Christmas.

    xxx

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