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    • #20732
      Mike Spiva
      Participant

      I was told last week 7/31/19 that I have IPF. When reading about IPF on the internet it says the life expectancy of a person with IPF is 3-5 year after being diagnosed, I’m assuming this is at the beginning stages of IPF.  When I asked my Dr how long I had he said IPF progresses at a different rate with people. I found out by a link on this site that I’m 6% away from stage 3, so I don’t know if I have 3-5 years like I’ve read or if because I’m further along if I’ll have less time.

      Does anyone have any information about this?

    • #20736
      Cynthia
      Participant

      The 3-5 year prognosis was last updated in 2014, the same year Ofev and Esbriet were approved. Those two drugs are extending life expectancy.

    • #20737
      Mark Koziol
      Participant

      @mikespiva

      Hello Mike, try to stay away from Dr. Google because the doctor has nothing nice to say about PF. The life expectancy you mention of 3-5 years is sort of outdated. Also every patient will have a different experience. Each person will go through the stages of PF differently as well. There are many who will stay in a lower stage for many years and then there are some who will have an exacerbation and never be able to recover. I assume they will probably prescribe ofev or esbriet in the near future. The medicines are currently the only meds that may stop the progression of ipf. The pulmonary fibrosis foundation is an excellent resource for you to surf. Take care, Mark.

      • This reply was modified 2 years, 5 months ago by Charlene Marshall. Reason: tagging
    • #20758
      Robert Obrien
      Participant

      Hi Mike, I agree with Mark.  I was diagnosed in September, 2015 and have been on Esbriet since January, 2016.  I honestly feel that I have had this disease for 5 years now and although I am going downhill, I think the Esbriet has help keep me upright.  I have been tested for transplant (the only known “cure” at this time) but am too stable to be listed yet.  I am 72 and except for a lousy pair of lungs, I’ve been told at MGH I am in pretty good shape.  If they offer me a transplant, I’m gonna take it.  I feel that right now, I’m existing but I want to be living and I think a transplant will give me that back to me or at least most of that for a few more years.

    • #20759
      Robert McGrath
      Participant

      Hello. I was diagnosed at the end of 2012, however I complained of shortness of breath on exertion 1 1/2 years before that. Thus, I am about 6 1/2 years from diagnosis. I am having a DLCO test next week since I haven’t had one in over a year. My FVC is 49. My last dlco was 35. I anticipate being in final stages before or by Christmas.

      I was in the last phase 3 trial for Esbriet and got in a few months after diagnosis which may have prolonged my life. Too, I switched my RX from Esbriet to Ofev and started buying Pirfenidone through Canada after both drugs were approved here. My thinking that since they both work differently, taking both might help. My doc said he didn’t think it would hurt and would continue to monitor blood. Standard dose of Esbriet through Canada is about $400 a month (cash US). Note that Ofev is not available otc in Canada. It is very important to eat before taking this combo as GI effects can be bad and result in vomiting if you don’t. Avoid caffeine and other irritants a few hours before and after taking your meds.

      Remember that the placebo effect it real so if you believe in what you’re doing it will help.

      Finally, you know how fast time goes by at my age of 67. Get your affairs in order, get it out of the way, and then concentrate on staying healthy and enjoying the time you have left with family and friends and this planet we call home.

      Best regards.

      • #20760
        Mark Koziol
        Participant

        Hello Robert, thank you for sharing your story. You offer excellent suggestions and comments. Best wishes, Mark.

    • #20772
      Piet Potgieter
      Participant

      Hallo Robert,

      Why don’t you import your Esbriet from India? It will cost you about 60 to 70 American dollars per month. It is called Pirfenex and made by Cipla. I have been taking it for the last just over two years and my IFP is not progressing according to a CT scan in January. I am 74.

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