Pulmonary Sarcoidosis: How are you dealing with it?

Posted by bboxer @bboxer, Dec 25, 2016

I'm very interested in creating a discussion group with other patients being treated for pulmonary sarcoidosis and how they're dealing with it. I was diagnosed ~ 10 yrs ago and it is unfortunately gradually getting progressively worse spreading from my lungs to other parts of my body. I'm mainly interested in what others have received for a prognosis and most of all how they handle the, at times, somewhat debilitating pain (primarily rib cage) that goes along with it.

Interested in more discussions like this? Go to the Lung Health Support Group.

I’m new to this group. I live in Victoria, BC, Canada. I have known about the granulomas in my right upper lung for several years but had no serious symptoms, so rather forgot about it. Two years ago I began to have regular fainting spells which resulted in explorations of my heart. X-rays showed the granulomas had grown and lung biopsy confirmed Sarcoidosis. Heart diagnosis was AVBlock - 3rd degree (meaning the heart would stop for several seconds). This led to a pacemaker install which corrected the problem. Heart specialist believes that the Sarcoidosis caused the electrical problem in the heart as my heart is very strong and healthy. I was on prednisone for a year. What a drug! Took away all of my body pains. After a year I slowly tapered off of the prednisone and have been on Methotrexate. THAT was a tough change, but I have come through it and have some of the joint pain back - but it is manageable. Heart is just fine.
My question to others is this: What follow up should I expect from the Respirologist? How often should they check the lung granulomas and also investigate if they have spread? And if they are stable or shrunk - does one go off of the Methotrexate? The Methotrexate causes one to be immune compromised and I have picked up Covid twice - despite begin a super careful person - and also a flu twice. With long recoveries. If I don’t need the Methotrexate any longer - perhaps my immune system would improve. Or is this a medication taken forever to keep the granulomas at bay?

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I have another important question about Pulmonary Sarcoidosis and whether there is any connection between it and exposure to a natural gas fireplace or cooktop and oven. Does this exposure irritate the lungs?

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I am also interested in dealing with pulmonary Sarcoidosis. I am only on an inhaler and my cat scans show no improvement, only slightly worse.

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