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    • #26833
      Prati
      Participant

      I was diagnosed with IPF 3years ago and have been taking Ofev 100 mgm twice a day ever since. I was in good health and active prior to my diagnosis. I have deteriorated slowly despite the medication and pulmonary rehab. I take oxygen 2 to 3 times a day.

      For the last 1 year, I have been experiencing intermittent Lower chest pain. The pain is just behind the 11th and 12th ribs on both sides. It comes on suddenly and lasts a few minutes and then dissipates.The pain is excruciating when it comes and brings tears to my eyes. I had an EKG done which is normal. Has anyone else experienced this symptom. Not able to get a scan because of Covid-19 lockdown.

    • #26835

      Hi Prati,

      Thanks for writing, though so sorry to hear about this terrible pain you’re describing. This isn’t something I experience regularly, and the only time I have its been associated with an infection or illness (sometimes fluid in the lungs) or after a prolonged episode of coughing. This seems to come on suddenly for you, with nothing obviously provoking it, like a cough? Have you spoken to your doctor about this? He may weigh out the benefits of getting a scan vs. the risk of the lockdown to get an answer for you as these sound quite painful.

      Has anyone else experienced something similar?

      Char.

    • #26836
      Jonathan Poland
      Participant

      Wow Prati, I’m sure it is scary when you experience that kind of pain.  I hope it never happens when you are driving or need focus.

      I learned in Pulmonary Rehab that various chest pains can occur with pulmonary fibrosis (PF), and are usually related to a full stomach putting pressure on the diaphragm and lungs.  But there can be other causes related to PF.  One of the most common is from the coughing that often occurs with PF.  And I’m not suggesting that gastro issues are your cause.  The scarring of the lungs from PF makes them stiffer than normal, and that makes other organs have a hard time.

      Chest pain has been one of my biggest frustrations.  I had a hard time convincing my GP (and myself) that the chest pain and shortness of breath was not heart related.  That delayed my PF diagnosis for at least a year.  By the time I actually saw a pulmonologist, he dismissed the chest pain as coronary too.

      We finally found the cause, and it was coronary, but not due to a blockage, rather an irregular heartbeat.  It didn’t show on an EKG because I never had an episode while I was getting an EKG.  It was finally diagnosed with a “Holter Test”, where you wear a portable EKG for 1 to 7 days and push a button when you feel “funny”.  And BTW, irregular heartbeats are a common problem with PF patients.

      There are so many causes for internal pain that you need to be persistent with your doctors.  It may be PF related, or may not.  There are a lot of organs near those lower ribs that could cause you trouble. All of them need to be considered.

      – jon

    • #26839
      Ben Robinson
      Participant

      A doctor is needed for this diagnosis. I don’t think it is the Ofev.

    • #26844
      Karen Martin
      Participant

      Prati, if what you are describing is like a muscle cramp in your ribs, I have been having those for the last three plus years and no one can figure it out.  I also have hypothyroid and the doctor told me it might be linked to that, but it has only really been active since the IPF diagnosis, but even before I started taking Esbriet.  It is a real witch to deal with!!  Very painful and no warning, ever.  I have tried massaging the area and stretching, to no avail.  I am sorry to hear you are dealing with that and truly wish I had an answer for you.   If misery loves company, I am here for you!    Karen

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