Sarcoidosis

Have been waiting for someone to inquire about Sarcoidosis.
Discovered when I was young (19) from test results, no treatment.
Lived with no ill effects at all. Doctor include chest X-ray as apart of yearly check-up. Sarcoidosis can appear in any organ in the body mine was lungs. Never a smoker always healthy.
However it reared itself after I turned 40, was asked to take Prednisone agreed but not the drug for me as it turned out. X-rays began to show more nodules then it became inactive, of course the nodules remained.
It is still considered inactive but unfortunately it has left me with scar tissue on the both lower lobs. Which cannot be corrected. Now on oxygen 24/7 which helps me to have better energy and live life to the fullest.
Do daily stretching, breathing excercise and keep moving to ward off loss of muscle mass. Now at 77 just changing life slightly for better quality.
Eat well ,laugh at life, stay active and when needed ask for help.

Be well-Duchess

Thank you for sharing !!
Mine was found on a cardiac calcium scoring, it was an incidental finding. At age 65
I go for CT scans at least yearly
I have had no treatment except for an inhaler. He nodules go away and come back. I am only worried about nodules turning into Cancer, so I keep rechecking

I was diagnosed with systemic sarcoidosis in 2022. Nodules in both lungs and mediastinal lymph nodes. Granulomas visualized in spleen, liver, vertebrae, ribs, shoulder, pelvis. Biopsies confirmed in lymph nodes and skin lesions. Unable to tolerate Prednisone and hydroxychloroquine. Began methotrexate 5 weeks ago. I feel like I'm getting great care at Mayo through Pulmonology and Rheumatology.

Fatigue and pain are my biggest issues, and I'm grateful to not have cardiac involvement or lung impairment at this point. However, I am unable to work at this time.

I'm encouraged to see long-term sufferers who are making a life despite limitations. Like so many struggling with"invisible illnesses" I feel very isolated, especially when I see nearly everyone not needing to take precautions against respiratory diseases. [No, I don't believe that the whole world should be masked up!]

Like so many have said here, I struggle with energy management. I was in fairly good health and very active less than 2 years ago. I still overdo things on good days and then suffer after. It's been hard to be patient with the slow pace of diagnosis and treatment. This is my first chronic illness and I am glad I found this group.

Wish you well
Hope the Methotrexate works out
Let us know

I was diagnosed with Sarcoidosis on 5/30/23. I have some granulomas in my lungs and due to granulomas in my kidneys I had kidney failure.
It is quite the journey. I have been on Prednisone now for over a year. I have three more months and then I am done.
I struggle with being tired a lot of my time.

I am sorry you have sarcoid. My husband has it and was diagnosed in 2001 when he needed an X-ray to complete an adoption in China. He had been treated for asthma for years. Switched doctors! He is seen at UMASS. His is inactive, but he has scar tissue and one collapsed lobe. He was not a smoker, but we lived at chimney level in Berlin, New Hampshire for 15 years. His breathing is terrible. I will tell you it is best to have it in your lungs rather than other organs. A neighbor had it as well ( makes you wonder about our environment). He had it in many organs and has passed. He went from being a healthy young man to looking like a thousand year old man in a matter of months. I had never heard of sarcoidosis till my husband and neighbor were diagnosed with it. My husband is 77 now. It is possible to live a regular length life with it in your lungs. It is no fun but better than having it in other places. He is checked yearly. Wishing you well. Irene5

Welcome @454june3736. Fatigue is a challenge. Will you taper off prednisone? What are the implications of kidney failure? Dialysis?

Thank you Colleen!
I am happy to have found support on Sarcoidosis. Sometimes you feel like the only one.
Yes, I am tapering off prednisone. I will begin 2mg 10/1. After I have tapered completely off,
I will see how my body reacts to not having Prednisone at all. I am praying that my body will do well.
I will have my complete renal blood tests in November and my nephrologist will view them with me. At this point, my kidneys are functioning at 23%. I don't think that I will have to be on dialysis unless my levels get worse.

I had never heard of Sarcoidosis either until last year. It totally turned my world upside down. I was in the hospital for 11 days. It took 3-4 days searching to find out what was going on in my body.
It sure is a journey. I am so glad that your husband is living a regular length life with it in his lungs. I am so sorry to hear about your neighbor.
Thank you for taking the time to share with me and encouraging.

One day at a time 🙂

Yes, one day at a time - and actually that’s the best way to live as we can’t change the past and the future is unknown. And don’t ask why or how you got sarcoid because it will make you crazy! I have MAC and aspergillosis and do what I can and what I can’t I can’t. Blessings , Irene