Scott Johnson
Forum Replies Created
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First time posting.
I was diagnosed with IPF in early 2021. Lung capacity was diminished, but not enough for oxygen. Had a nasty cough and tired easier. Cough continued to get worse. March 2022 saw me in the ER due to the coughing and general weakness. Came out of the hospital on oxygen 24/7. Saw my pulmonologist, tested lung capacity was below 50%. He started me on 50mg per day of prednisone for one month, then 40mg for one month, etc. I had been seeing a pulmonologist at Mich Med (UofM Ann Arbor) and he wanted the level reduced weekly until entirely off. When I got to 10mg per day, I was back to coughing and tiring easily. Went back to 20mg per day and things seemed to stabilize, but the longer I was at this level the cough and tiredness returned. Pulmonologist ok’d increasing prednisone to 40mg, and within a few days the cough was gone and my energy level was starting to improve. I have a CT scan next week and a visit with my pulmonologist in January.
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I was finally diagnosed with interstitial pulmonary fibrosis 20 months ago. I live in Southgate, MI, which is downriver Detroit. I go to a pulmonologist in Dearborn affiliated with Beaumont Hospital and another in Ann Arbor affiliated with Univ of Mich hospital. Finally got on Esbriet thanks to the mfgr covering the cost. No support group, but there should be.
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Hi all. I was diagnosed with interstitial pulmonary fibrosis in March 2021. I had been having symptoms prior to that, none of the doctors found the problem until they had a pulmonologist check me. He detected the crackles right away. Oxygen level ok. He had me do pulmonary rehab that summer and started me on 50mg/day prednisone. Energy level improved. Was referred to a pulmonologist at Mich Med (Univ of Mich). He confirmed the diagnosis but wanted the prednisone level reduced – currently at 20mg/day and holding. Suggested Ofev or Esbriet but did not give me a perscription. Finally got a prescription and started Esbriet two weeks ago. Was having issues with my coughing all through this, but it seems to have gotten worse after starting Esbriet. I feel tired all the time. On 3l oxygen 24/7.