• Posted by Gail on February 4, 2022 at 3:33 pm

    Hello to all.

    I am newly diagnosed with IPF. It was discovered from an X-Ray for a sinus infection/bronchitis.

    I guess I’m wondering why I haven’t been put on anything yet? Is that common if showing little signs? I do have shortness of breath from time to time. From what I have read, the 2 meds for IPF are quite costly.

    Any suggestions as to what I should ask my doctor when I go in March for my second visit. ( I’ve had all my tests)

    Wishing all good health and miracles.

    Gail

    Phyllis Della-Latta replied 2 years, 4 months ago 5 Members · 4 Replies
  • 4 Replies
  • Doug

    Member
    February 7, 2022 at 1:57 pm

    Based on my experience IPF isn’t diagnosed by Xray.  The xray may give reason to suspect it  but a more advanced CT is the next step.  I would definitely see a pulmonologist.  In my case after a CT I had a lung biopsy though I don’t know if I’ would have it again.  A legitimate  diagnosis of IPF is not reason to start O2; having O2 levels below 89 is the reason to start O2.  I was first started on O2 after my sleep was monitored and there were periods of time my O2 level went below 88.  As a result I was given (rent paid for by medicare) a large plug in only, continuous flow concentrator.  Continuous flow is necessary during sleep as at times during sleep  breathing is too shallow for pulse to work.  It seems to me that no matter what your lung issue is, the  six minute walk test is the best way to determine if you need O2 and how much.

  • Linda Maguire

    Member
    February 8, 2022 at 3:17 pm

    Gail,  I agree with the response from Doug that an XRay is not confirmation of IPF.  One should  see a pulmonologist who will generally recommend a CT scan, a pulmonary function test, & a 6 min. walk test before diagnosis is made.  Often a lung biopsy is also recommended, however I believe the current thinking is that a CT is enough.  In my case, my pulmonologist also had about 40 blood tests done to rule out an autoimmune or other disorder.  I also had a barium swallow which led to a diagnosis of “silent” gastric reflux, which is quite common among those with IPF.  Not sure what tests you have had done.

    The 2 approved medications for IPF are costly (about $100,000/year) & have a number of side effects.  They are often prescribed to slow the progression of the disease.  I was diagnosed 6 years ago and went to National Jewish Health in Denver for a 2nd opinion.  There are a number of pulmonary fibrosis “care centers” around the country, and having a 2nd opinion might be helpful once you have other diagnostic tests and/or if you don’t have any predisposing factors or fit the typical pattern, as was my situation.  I am not on Ofev or Esbriet, but take generic Prilosec to treat the GERD, which is thought to be the possible source of my fibrosis.  My CT scans have not shown any progression of the fibrosis and my PFT’s & 6 min. walks have remained stable over the past 6 years,  which is why I have not started anti-fibrotic medication.  It sounds like you need a thorough workup for a more definitive diagnosis before starting any treatment.  Good luck!

  • Brenda

    Member
    February 8, 2022 at 3:51 pm

    Hi Gail,I was diagnosed with IPF 2 years ago snd I’m still not on medication. I have had 2 CT scans. But last one showed no progression. Only have trouble breathing sometimes if I walk really fast or going up a hill. Cough in the mornings sometimes but have never been prescribed medication. I go back in April and will see what pulmonologist has to say. A really puzzling disease.

  • Phyllis Della-Latta

    Member
    February 8, 2022 at 6:02 pm

    Gail,
    For diagnosis of pulmonary fibrosis you need a CT Scan, pulmonary function tests & possibly a  biopsy. Make sure your primary clinician is a pulmonologist who is knowledgeable about PF & IPF. X-rays are not useful for PF diagnosis. Good luck.

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