• Sarkiodosis and fibrosis

    Posted by Susanne on November 19, 2023 at 8:33 am

    Anyone here with both pulmonary sarkiodosis and lung fibrosis? If so, how long have you lived with pulmonary fibrosis?

    Sue Ann replied 1 week, 3 days ago 2 Members · 1 Reply
  • 1 Reply
  • Sue Ann

    November 21, 2023 at 6:22 pm

    I was diagnosed with both early in 2020. CT indicated IPF, but biopsy came back showing Granulomas. My pulmanologust at Cleveland Clinic said Sarc is rare, IPF is Very rare, and to have both is extremely rare. I have osteopenia, so steroids were never an option, so sarcoidosis has gone untreated. I have been on Ofev, and switched now to Esbriet, but neither has helped much. My last PTF had a huge decline. It has been very difficult to know what is affecting my lungs more…IPF or Sarc. The coughing is about killing me, and can be blamed on either and both.

    Have you had a biopsy, and does your doctor have experience with either of these diseases? Finding one to treat both can be a challenge. Even at Cleveland there are docs that specialize in one or the other. Having both makes them all look at you like you have horns growing from your head.🤨

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