• Posted by David Skiver on June 22, 2023 at 3:41 pm

    I am 76 years old and have recently been diagnosed with IFP March of this year.  However, I have had symptoms that have gradually increased over the last 2-3 years.  I have researched, discussed and read opinions about the various medications that produce varying results depending on the patient’s individual situation.  An of course there is the issue of side effects.

    I personally have opted out of any medications.  I am fully aware of the consequences of my decision but have elected to enjoy the quality of life rather than to endure the adverse effects and for the possibility of a marginal (my take) slowdown of the progression of the disease.

    I find that my decision has had a positive effect on my life already.  My love for my beloved wife has gotten even deeper, colors are brighter, my grandchildren are even more delightful, etc.  In short, as horrible as this dreaded disease is I can’t help but feel it is in a rather bazaar way a blessing.

    I truly believe that I appreciate things in my life on a deeper, more spiritual level.  Does anyone else share this?  Would love to hear your thoughts.

     

    anonymous replied 1 year, 5 months ago 4 Members · 4 Replies
  • 4 Replies
  • David Reno

    Member
    June 22, 2023 at 4:05 pm

    David I have battled with do I or don’t I. For now I have been taking the lower 100mg OFEV, doing o-k with it. If the 150 mg was all that I could get I most likely would not take it. I tried it for awhile it was not fun. I am 71 about 3 years with IPF.  I feel the same as You. And when it comes right down to it, it is the best way. There are over 150 types of IPF some not so bad. My bro. in-law is on year 9 with and without the drug mostly with 100 mg. I just tell Myself that’s the one I got. Good luck and God bless.

    David

    • Amber

      Member
      June 29, 2023 at 12:06 pm

      Hello..i aswell see the world more beautiful lately..i see everything,,betterr,, with other other eyes it seems..like you say..colors ,details…i am taking ofev btw sinds one year..i have IPF sinds 6 years

  • anonymous

    Member
    June 22, 2023 at 6:38 pm

    new (better) drugs are coming, a lot of research is ongoing.  🙂

  • Adele Friedman

    Member
    June 27, 2023 at 3:08 pm

    Just want to mention there are some drugs that may relieve SOME symptoms without heavy side effects. In my case, mycophenolate resolved a lot of inflammation, along with nebulizer and later, Symbicort through an Aerochamber. I don’t have IPF; I have ILD caused by Sjogren’s Syndrome (an autoimmune condition).

  • anonymous

    Member
    June 27, 2023 at 3:13 pm

    The world’s first ever AI-generated small molecule drug has completed Phase 1 trials and was “well tolerated”.

    Guess what it is going to be for?

  • Terri

    Member
    June 28, 2023 at 12:58 pm

    @AdeleFriedman – Hi, my ILD is also caused by Sjogren’s. I’m on mycophenolate also. How can you tell that it’s resolved inflammation? What are some of the signs? I’m waiting for insurance approval to go on Ofev. My doctor is appealing their denial to pay for the drug. I’m only 60 and want to at least make it past retirement so I can enjoy some “free” time with my husband. I still work full-time.

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