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Idiopathic Pulmonary Fibrosis

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neville93106
neville93106

I am 80 years old, and people may like to know how things are going.  I was diagnosed with IPF in March 2014, and in May 2014 I began to take Pirfenidone (also called Esbriet).   Yesterday my pneumologist told me that there had been no change in my condition over the last 6 months.  My blood oxygen and blood chemistry are satisfactory, my blood pressure is 120 over 70, and

although with even slight exertion I get fatigued and out of breath I feel quite well otherwise, and even slightly better.

So I strongly advise demanding Pirfenidone if you have IPF.

Pirfenidone is clearly very effective, seems to stopped the development of the disease in its tracks at least for now, and has no detectable side effects in my case.  All this was reported in the New England Journal of Medicine in May 2014.

i should add that I live in France where I can get an IRM scan whenever my GP asks for it, and the prescription of Pirfenidone was done immediately by my pneumologist with no delay once he saw the scan and listened to my chest.

good luck to all fellow sufferers!

neville Moray

0 likes, 5 replies

5 Replies

  • brenda62546
    brenda62546 neville93106

    Posted

    Neville, that is really good news! I hope the disease has stopped developing and will stay this way for a very long time. Thank you for sharing too! xoxo
  • swastya100
    swastya100 neville93106

    Posted

    Neville,

    It's really promising to hear your progress. My mum has been put on the same since January this year and she showed considerable improvement. However, sometimes there are these bouts of cough (sometimes even with phlegm) which are troublesome and also disturb her sleep. The local pulmonologist prescibed a codeine based cough syrup, but that's not a lot helpful. Is there anything that you are using or would recommend to keep the cough at bay for a long term? Appreciate all advise & keep up the spirit!

    • neville93106
      neville93106 swastya100

      Posted

      I still cough sometimes, and with phlegm.  But it has become less severe with time.  I had bad coughs to begin with, and it took about four months to get less.  I use over the counter French cough mixtures. I dose of "Bronchcod sans sucre". (Brochcod Without sugar) in the morning for a "loose cough",  and one dose of Clarix in the evening at bed time (or sometimes at night when I wake), for a dry cough.

      having a cough and phlegm is just part of the disease and probably won't go away, but don't really matter.   I have abou 65% normal lung capacity, and my blood oxygen varies from about 82% to 97%.   I am severely restricted in how much exercise and effort I can undertake.  For example sitting and driving is fine, but climbing a flight of stairs or mowing a lawn is extremely difficult.

      but that's life!

      best wishes to your mum.

      neville

       

    • swastya100
      swastya100 neville93106

      Posted

      Hi Neville,

      Thank you so much for your inputs. I've made a note of these cough medications for my mum which I will enquire with her pulmonologist. I hope you get much better than now & best wishes to you too. 

       

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