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Nintedanib and FVC

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epictetus1939
epictetus1939

I have just been diagnosed with IPF.  It has been found at a very early stage for which I am most grateful to my GP for sending me to see the consultant.  I only get short of breath on exertion.

I am not eligable for Nintedanib because my %Predicted FVC has to be <=80% here in the UK.  It is 112.6%.  It seems unreasonable (to put it mildly) that I must wait till I am almost dead before i can get treatment.

i would love to hear from anybody in a similar position.  

0 likes, 4 replies

4 Replies

  • susan5601
    susan5601 epictetus1939

    Posted

    My husband was diagnosed with IPF in Sept 2008 lke you his condition wasnt bad enough to be treated and he suffered with just breathlessness until a year ago when his health went rapidly downhill. We had become complacent and by the time we realised how bad he had got it was too late the doctors said he wasnt suitable for transplant . I am ashamed to say my husband played down his illness to save .me from worry and I believed him. but when the doctors didnt do anything or seem to listen when even I could see things were bad I was stupid enough to believe them when they said they could get him back to the stage before. my husband passed away a few weeks after I know this will not help but push as much as you can as being complacent seemed to result in the doctors ignoring my husbands distress
    • epictetus1939
      epictetus1939 susan5601

      Posted

      Hi Susan

      Thanks so much for your reply.  I am quite new to this so it is really good to "join the club".  I have managed to get a very early diagnosis and treatment by joing a drugs trial so I am in good hands. Even if your husband had got a full dianosis in 2008 there would not have been any treatment available till 2015 when the first drug was launched on the NNHS. Perhaps it was better not knowing.  I could have been diagnosed 3 years ago but nobody looked at the xray but it would not have helped me.  Please do not blame yourself.  He would have wanted you to look to the future and enjoy what life has to offer.Brian

    • susan5601
      susan5601 epictetus1939

      Posted

      Thank you and you are right. I have been in touch with my husband's first consultant who is involved in research for IPF and she said they are looking at Rape seed as it seems that there is something in it that caused people who have lung problems to get worse. She did tell me what it was but have to admit it went over my head a bit. Here in north Yorkshire we are surrounded by the stuff and it's in nearly everything you buy, so there will be a battle to prove it especially as the government actually pay farmers to grow it. I have started making bracelets with swarovski crystal beads which I sell and donate the money to BLF it's not much but every little helps

    • epictetus1939
      epictetus1939 susan5601

      Posted

      BLF are wonderful.  I have used them already for information and expect to do more in future. Thanks for your contribution.

      The Rape seed pollen thing is amazing.  So many people get immediate symptoms if they go near a rape field.  It does not need much imagiation to believe it would do permanent damage but how to proove it?  I believe rape seed is used as a "renewable" energy source...may be renewable but still produces carbon when it is used.  good thing to see ones MP about to get a question asked in the house.

      All the best

      Brian.

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