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Additional meds prescribed for sarcoids

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jen2017
jen2017

My husband was diagnosed 18 months ago with pulmonary sarcoid . He has completed a couple lengthy stents of high dose prednisone with minimal improvement. He continues to have shortness of breathe, fatigue, cough and no stamina with activities. His most recent CT showed larger and more sarcoid. The plan now is to us the secondary meds to protect his lungs more than treat symptoms. I am wondering if anyone out there has taken Acthar??? It is not without major side affects but if the outcome is successful-the risk is worth it. Any feedback is greatly appreciated.

What other secondary meds have been successful for others?? Thank you!!

0 likes, 2 replies

2 Replies

  • debie1966
    debie1966 jen2017

    Posted

    Hi Jen,

    When prednisone alone didn't work for me, they added methotrexate and plaquenil. They did the trick for me when it was active in my lungs. It is now in my bone marrow and I'm on methotrexate, plaquenil and get remicade infusions every 4 weeks.

    When it was active in my lungs, I was never able to go off prednisone. In many cases, X-rays will show the sarcoid as being under control while under treatment however, when you stop the treatment it returns and often worse than before. When my PER scan showed it to be under control in my bone marrow, I came off my treatments. I regretted that so much as it came back within 6 months time.

    I hope your husband is able to get his under control and keep it under control until it gets inactive permanently.

    Deb

    • jen2017
      jen2017 debie1966

      Posted

      Thank you so much for sharing this info/ here's to hoping for success when these meds.

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