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Joy Hoffmann

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@joye

Had a bad diarrhea flare up.did not eat enough and took 150 OFEV pill. Need food! Thank you All for the great advise re kinds of food to eat Karen, ,your discussion comments are so helpful Thank,you! I feel in a way very fortunate because I have only had IPF for one year and I am 83 So I have had a long wonderful life. So sad for those […] View
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  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 7 months, 2 weeks ago

    I am going from 150 mg to 100 mg because of gas and diarrhea  Is the lower dosage just as effective as the higher dosage.

    .

     

  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic Ofev Users can Safely take Ofev on a Long Term Basis in the forum Ofev (Nintedanib) 8 months, 2 weeks ago

    This web site is great for people to vent.
    I was diagnosed with IPf in April of 2020. My doctor immediately  prescribed OFEV. So Fay the diseases has not progressed. I walk everyday .Eat a high healthy diet.And the real positive is that I just started an 8 week PF rehab program. I have always been active and healthy so this shortness of breath…[Read more]

  • Profile picture of Joy Hoffmann

    Joy Hoffmann posted an update 10 months, 3 weeks ago

    Had a bad diarrhea flare up.did not eat enough and took 150 OFEV pill.
    Need food!
    Thank you
    All for the great advise re kinds of food to eat
    Karen, ,your discussion comments are so helpful
    Thank,you!
    I feel in a way very fortunate because I have only had IPF for one year and I am 83
    So I have had a long wonderful life.
    So sad for those…[Read more]

    • Profile picture of Christie Patient
      Christie Patient replied 10 months, 3 weeks ago

      Hi Joy! I’m happy to hear you have had a long and fulfilling life so far, full of family and health! Was your sister diagnosed with PF as well? There are some interesting conversations going on in here about familial linked PF, have you seen them?

      One more note, it looks like you posted this as a status update, so the forum community probably…[Read more]

  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic High Humidity Can Be A Hurdle for Patients with PF in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 3 weeks ago

    Oh another thing

    i had a horrible 8 hours of stomach cramps and diarrhea after taking 150 of OFEV on a rather empty stomach.

    only had a hamburger  and French toast that day

    so everyone be sure you eat a good meal.

    I usually eat more and then can tolerate the OFEV

  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic High Humidity Can Be A Hurdle for Patients with PF in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 3 weeks ago

    Will be going to,Utah for 19 days and very concerned re heat and high altitude

    any advice on how to cope with IPF?

  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic Living with IPF vs When Diagnosed in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 1 month ago

    April  2021

    I know all patients progress with this disease and we are all progressing at different rates.

    I guess in a way I am fortunate because I am 83 and was diagnosed  one year ago

    I have been on OFEV all that time

    I have only shortness of breath on stairs and doing housework

    I walk 3 miles each day

    I am sad for those who are so young w…[Read more]

  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic Burning feeling in chest in the forum Using Our Forums 1 year, 2 months ago

    That is acid reflux probably.

    It is very common with PF .

    Talk to your Dr about it.

     

  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic New to this forum and kind of confused in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    So who has Pulmonary hypertension!
    I feel like death is just around the corner.

    I have both

    IPF and PH

     

  • Profile picture of Joy Hoffmann

    Joy Hoffmann posted an update 1 year, 2 months ago

    Fear

  • Profile picture of Joy Hoffmann

    Joy Hoffmann posted an update 1 year, 3 months ago

    So far so good

    • Profile picture of Mark Koziol
      Mark Koziol replied 1 year, 3 months ago

      Thank you for sharing Joy!

  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic Afraid of the unknown in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    I find staying positive and calm helps so much.
    I will have my first breathing test since being diagnosed in March and have been on OLEV since that time with no side effects.
    My tests are at the end of Nov  and I am very nervous about it.I am a young  82 year old so pretty much have lived a wonderful long and healthy life. At this point all I c…[Read more]

  • Profile picture of Joy Hoffmann

    Joy Hoffmann replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 1 year, 7 months ago

    I have been taking 2 green tea extracts for about 3 months. Not sure if it helps or not.

  • Profile picture of Joy Hoffmann

    Joy Hoffmann posted a new activity comment 1 year, 7 months ago

    Does Charlene have a different forum…?
    If so I should say thank you Mark

    View Conversation
  • Profile picture of Joy Hoffmann

    Joy Hoffmann posted an update 1 year, 7 months ago

    First of all. Thank all you who contribute to this discussion.
    What in uplifting experience.
    I am very fortunate that I experience only shortness of breathe and not all the other symptoms that are discussed here.
    I am 82.. very healthy until this IPF reared it’s ugly head.
    Have been on OLEV since my March 2020 diagnosis with not ill effects.
    I w…[Read more]

    • Profile picture of Mark Koziol
      Mark Koziol replied 1 year, 7 months ago

      Hello Joy, thank you for the kind words. I think it’s fantastic you are doing so well. I love it that you continue to remain active. Thank you again, Mark

  • Profile picture of Joy Hoffmann

    Joy Hoffmann posted a new activity comment 1 year, 11 months ago

    Thank you Mark….

    View Conversation
    • Profile picture of Mark Koziol
      Mark Koziol replied 1 year, 11 months ago

      You are most welcome Joy!

  • Profile picture of Joy Hoffmann

    Joy Hoffmann posted an update 1 year, 11 months ago

    Will have breathe test on July 6.
    Hopefully No progression

    • Profile picture of Mark Koziol
      Mark Koziol replied 1 year, 11 months ago

      Hello Joy, I’m thinking positive thoughts for you. Best wishes, Mark

  • Profile picture of Joy Hoffmann

    Joy Hoffmann became a registered member 1 year, 11 months ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 1 year, 11 months ago

      Hello Joy, welcome and thank you for joining your pulmonary fibrosis forum.

      • Profile picture of Joy Hoffmann
        Joy Hoffmann replied 1 year, 11 months ago

        Thank you Mark….

        • Profile picture of Mark Koziol
          Mark Koziol replied 1 year, 11 months ago

          You are most welcome Joy!

    • Profile picture of Joy Hoffmann
      Joy Hoffmann replied 1 year, 7 months ago

      Does Charlene have a different forum…?
      If so I should say thank you Mark

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