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Pulmonary Sarcoidosis: How are you dealing with it?

Lung Health | Last Active: Sep 23, 2023 | Replies (126)

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@jessicap42

Thank you for sharing. I was just recently diagnosed with sarcoidoisis and have been told nothing about my disease or the prognosis. I ask questions and can't seem to get a straight answer. One doctor just told me to continue living life as I was, that nothing can be done. I was treated with steroids at initial diagnosis for 2 months which did take the swelling down, but I wonder now what? Is there any precautionary measures I can take? Is there anything that can slow or stop the progression of this disease? Any info would be of great help. Any resources I can get would be of great help! Thanks for reading!

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Replies to "Thank you for sharing. I was just recently diagnosed with sarcoidoisis and have been told nothing..."

Hi @jessicap42, I have no medical background or training but the fact that you are here on Connect asking questions and trying to learn more about your health condition is a big first step. The more we can learn, the better questions we can ask our doctors and hopefully they can help us with a better treatment plan. Mayo Clinic has some information on sarcoidoisis that may provide a little more information for you.

Sarcoidosis - Diagnosis & Treatment
-- https://www.mayoclinic.org/diseases-conditions/sarcoidosis/diagnosis-treatment/drc-20350363

Here's another site you might find helpful.

Prognosis for Sarcoidosis - Foundation for Sarcoidosis Research
-- https://www.stopsarcoidosis.org/what-is-sarcoidosis/prognosis/

Hope this helps!