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Sharon

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@crystal

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    Sharon replied to the topic Digital Clubbing in Pulmonary Fibrosis Patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    1. I was only diagnosed with ipf October last year. My fingers started clubbing at least twenty-five years ago because I remember my mum noticing them and remarking on them. My mum  pasted away over twenty years ago.
    2. When ever I get a cough instead of it lasting a couple of weeks like the rest of the family I have it for two or three months and…

    [Read more]

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    Sharon replied to the topic Low dose of Esbriet, is it worthwhile? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    Hi Charl,

    Sorry I didn’t see your post until now.

    I am now on 100 mg twice a day of the nintendanib and have been for a few months now. Still having stomach cramps and a little bit of diarrhea but nothing I can’t handle. I had my assessment with the transplant team three weeks ago and was so pleased when they said I did not need to go on the…[Read more]

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    Sharon replied to the topic Low dose of Esbriet, is it worthwhile? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years ago

    Hi, I stared on Nintedanib last November 150mg twice daily. I had a call from my respiratory nurse middle January saying to reduce meds to 100mg twice daily. I thought this was because of the side effects I was having. Had another call from respiratory nurse yesterday asking me to go to the hospital today for a blood test as my liver enzymes are…[Read more]

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    Sharon posted a new activity comment 2 years, 1 month ago

    Hi lda,
    Reading your post was as if I had almost wrote it.
    I was diagnosed October 2020 and I will be 61 this April. Been experiencing breathlessness for a few years but always put it down to my bad back.
    I was on Ofev 150 twice a day but now on 11 twice a day because I was experiencing stomach cramps and diarrhea through out the day. It has eased…[Read more]

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    • Profile picture of Ida Anker
      Ida Anker replied 2 years, 1 month ago

      Dear Sharon, so sorry to hear that you have this awfull diagnose aswell. I’m on week 5 With Ofev, and happily still no side effects. Lung transplant is currently no issue for me, as the Doctor says I’m to healthy at the moment. DO you have less lunge capacity? I’m currently at 70 % and doing well except climbing hills. Lets stay in touch. Take…[Read more]

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    Sharon posted a new activity comment 2 years, 2 months ago

    Hi Mark,
    Thank you for accepting me on your forum.

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    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 2 months ago

      Hi Sharon, you are welcome but this is your forum as well. Take care, Mark

  • Profile picture of Sharon

    Sharon became a registered member 2 years, 2 months ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 2 months ago

      Hi Sharon, we are delighted to have you as a member of the pf forum. Welcome!

      • Profile picture of Sharon
        Sharon replied 2 years, 2 months ago

        Hi Mark,
        Thank you for accepting me on your forum.

        • Profile picture of Mark Koziol
          Mark Koziol replied 2 years, 2 months ago

          Hi Sharon, you are welcome but this is your forum as well. Take care, Mark

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