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Pulmonary Sarcoidosis: How are you dealing with it?

Lung Health | Last Active: Sep 23, 2023 | Replies (113)

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@sarcoidosis

Hello and thank you for moving me to this group.
I have sarcoidosis of liver, spleen, skin, lung and bones...spine and hip.
I would love to know what medication has helped you.
Thank you

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Replies to "Hello and thank you for moving me to this group. I have sarcoidosis of liver, spleen,..."

Hi ...I was diagnosed with sarcoid in 2004 and had to have a heart transplant in 2017 due to sarcoid induced cardiomyopathy. After the removal of my heart, the docs could see the granuloma in my ventricles. The sarcoid started in my eye - with an iritis- and then went to my heart - I needed a pacemaker (we didn't put one and one together yet) - and then to my lungs. I started on prednisone and methotrexate - a powerful but effective combination for me - was taken off of the methotrexate as it interfered with one of my anti-arrhythmia drugs. I was on 45 mgs of prednisone a day for over a year and tapered off very slowly the second year. I then went on azathioprine to manage the sarcoid. I was off of all meds in 2016 when I went to Mayo for consultation for my heart. My EF ratio was 18 at the time. I went on IV meds, was placed on the list and received my heart shortly after that. My heart transplant doctor placed me back on prednisone - 5 mg - post transplant, which I still take. My transplant was two years. He is still concerned about recurring sarcoid. I too have asthma @rosemarya and I'm sure the prednisone helps with that. One item my pulmonologist always checks is my ACE level - blood test. Apparently, one third of all sarcoid patients have elevated levels when sarcoid is active. It soothes my soul when I see the level come back normal. Just a thought. I wish you well. @sarcoidosis