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Pulmonary Fibrosis

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BOND07
BOND07

Hi

I was diagnosed with pulmonary fibrosis 2 years ago but have had the symptoms I feel for longer. I have recently had a lung xray due to poor health which revealed that my fibrosis had got worse, apparently there is a new medication that can only be prescribed by a doctor from the local respiratory team, but how long is the wait on NHS or Private, my doctor not pulling any punches suggests that I will be in a bad way in 10 years ???.

0 likes, 12 replies

12 Replies

  • jay42329
    jay42329 BOND07

    Posted

    Hi, my dad is in the same position as you.we have been waiting for almost 2 years to get the medication he needs and even get an appointment with the specialists he needed to get it. We gave up waiting for the nhs and booked a private appointment with prof Toby Maher who is one of the leading pulmonary fibrosis specialists. We had an appointment within a week and he prescribed the drugs which we had been waiting for for almost two years, and would still be waiting for if we left it down to the nhs. I would not hesitate in going to see him and feel we should have done it a long time ago.
    • adrienne35302
      adrienne35302 jay42329

      Posted

      Send toRev Pneumol Clin.1985;41(2):91-100.[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

      Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

      Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.

    • adrienne35302
      adrienne35302 jay42329

      Posted

      .[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

      Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

      Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.

  • rich1mac1
    rich1mac1 BOND07

    Posted

    Depends on the medication, and the disease. There are many types of PF, did your doctor tell you which one you have? How was it diagnosed? Is your doctor a pulmonologist? These questions must be answered I feel. Ask yourself and then see a professional in the field to get the answers you need. 10 years is a long time for some with PF, example is the median time for IPF can be any where from 3 to 5 years on average.
  • rita09697
    rita09697 BOND07

    Posted

    Do what you have to do the quicker the better...maybe if you get on this medication to slow the progress of the disease; in the time you are on the medication; they will find a cure for this dreadful illness; no matter what the age is of the victim....you can't equate age with feelings..........I had the experience of loosing a parent to this disease; she wasn't a candidate for this medication because she had other medical issues............it might have halted the disease if she was able to have taken the meds.............and think positive....a delay or dormancy in the disease is what is preferable to an ascendancy of symptoms culminating in death. good luck

     

  • bob80691
    bob80691 BOND07

    Posted

    Hi Bond:

    Although I'm originally from the UK (long time ago) I have lost touch with the NHS and its procedures.  The drugs you refer to have been on the market for 3 - 4 years now.  They are not a cure but can slow down the progress.  I'm VERY surprised your GP has not referred you to a lung specialist a long time ago.  You should insist he does and don't take any excuses.  Specialist will probably send you for a CT Scan and conduct a lung function test and go from there.  Good luck and think positive.

    • rita09697
      rita09697 bob80691

      Posted

      we were referred to a lung specialist when she was diagnosed at 80....it stayed dormant for about 10 years then it resurfaced viciously.............by that time she had other medical issues and was on a lot of meds so that specialist advised us against it....there is a no win situation with this sickening disease....some have more years others less; but in the end there is no cure...and it is painful ordeal to sit by and watch it progress from a little energy to no energy....and then finally a horrendous cough, tied to the bed and not even able to go to the washroom.......really sad when the person is functioning cognitively 99%...............one day I hope and pray they discover a cure for this disease the sooner the better.

       

    • adrienne35302
      adrienne35302 rita09697

      Posted

      .Send toRev Pneumol Clin.1985;41(2):91-100.[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

      Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

      Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.

  • rich1mac1
    rich1mac1 BOND07

    Posted

    I see a lot of speculation on the Medication, as I said there are over 200 different forms of PF, many have different medicines to treat or even cure, some have no med's at all. So it is imperative to get an exact diagnoses. I can only assume many on here are talking about Esbeseret, or Ofev, These are drugs that treat some forms but not other's, it has a cost of about $96K a year, so be sure to get a good diagnosis first. 

    • adrienne35302
      adrienne35302 rich1mac1

      Posted

      Send toRev Pneumol Clin.1985;41(2):91-100.[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

      Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

      Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.

  • adrienne35302
    adrienne35302 BOND07

    Posted

    .Send toRev Pneumol Clin.1985;41(2):91-100.[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

    Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

    Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.

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