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bboxer (@bboxer)

Pulmonary Sarcoidosis: How are you dealing with it?

Lung Health | Last Active: Aug 10, 2020 | Replies (106)

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Hi, I am going to jump in here because I had nodules removed from my lungs which I was told was sarcoidosis. This was five or so years ago. None of doctors ever said much more about it. so I had no idea what stages and forms it could take. I have a lot of different health problems. Finally found a doctor that seems to be trying. I have dizziness, nausea, blurred vision and some other persistent symptoms. I was diagnosed with COPD (bronchitis) some time ago. Presently, we are looking into low oxygen level. I had a finger monitor test last night. I may push my doctor more on sarcoidosis, depending on what I learn here. Thank you all.

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Replies to "Hi, I am going to jump in here because I had nodules removed from my lungs..."

My husband was diagnosed with sarcoid in 2001 after previously being treated for what the doctor thought was asthma. It was diagnosed accidentally by an X-ray. He then was seen in Boston and had a lung biopsy to confirm it. Since then he has been on prednisone infrequently and continuously on inhalers. Sarcoid is either active or inactive. It can be either at any given time. A recent CT scan with dye confirmed that my husband’s sarcoid was inactive. His is in his lungs and around his heart. He has low oxygen levels most of the time. This has to be closely monitored when having any procedure. Our neighbor also has sarcoid ( hmm), but his was very debilitating as it affected many organ systems. He was diagnosed around the same time. His is inactive now as well, but he really suffered. If you have sarcoid nodules without other debilitating symptoms I am guessing your sarcoid is inactive. There is no cure and no known cause ( only conjecture) as to how a person contracts sarcoid. Sometimes it is seen on X-ray as “old” sarcoid. Best of luck, and I hope this gives you a bit of information. Irene

Thank you. A few years after the nodules, I had some bad symptoms and was eventually diagnosed with Lyme. After three weeks of antibiotics, I was much better but in a few weeks the same symptoms came back. Things I have heard since make me wonder if it was Lyme but I had been bit by a number of ticks. I changed doctors and she is looking at my kidneys, liver and back to COPD, most specifically now at low oxygen level. I keep looking for anything that will get me back to being active again. I had no idea there was this much to sarcoidosis. I just keep looking. My best to you to you and your husband. Hope his stays inactive.

Thanks for your post I’m assuming my S is inactive as it was discovered in a CT scan following a bad car accident. In lungs but no symptoms, I do have numerous painful nodes in various places and wondering if others have them and how they handle the pain