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Sarcoidosis

Posted by shar1120 @shar1120, Jun 4, 2023

Has anyone had/have sarcoidosis? Each CT scan is good then bad as far as nodules. This is going on for 7 yrs with no actual treatment plan except an inhaler. Looking for anyone that can relate

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pkh3381 | @pkh3381 | Sep 29, 2023
In reply to @duchesslady "Have been waiting for someone to inquire about Sarcoidosis. Discovered when I was young (19) from..." + (show)
@duchesslady

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

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I find this very interesting because I had a Dr do testing and sent me for a consult with a Sarcoidosis Specialist, but then just left me hanging and never followed up with a final Dx, or non-Dx, just dropped it. But, since then, I have had so many symptoms of Sarcoidosis, including lung nodules and scar tissue on one lower lobe. I have MCI, so can't recall the other symptoms I had right now, but always wondered if I did have Sarcoisodis. I know there were other symptoms that pointed to it, but just can't think of them right now. In my life, just another time that Drs have thrown around Dx's, but then left me hanging. I did finally get the courage to be my own advocate and speak up to the Drs, but this was after that episode. I am curious if you are on oxygen because of oxygenation issues? I have developed these issues since about 2019 and still continue to deal with oxygenation "dips" all the time, even into the upper 70s. But, again, Drs have failed me! LOL! Are oxygenation rate issues related to Sarcoidosis? Just wondering. Thank you for sharing. Your post really sparked my interest.
P

REPLY
shar1120 | @shar1120 | Dec 27, 2023
In reply to @454june3736 "I was diagnosed with Sarcoidosis on 5/30/23. I have some granulomas in my lungs and due..." + (show)
@454june3736

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.

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Hello. Curious how they found granulomas in your kidneys ? Did you have symptoms and then a kidney scan.?
I have not been on prednisone yet but since I was tested for everything else and all is negative, I assume it is just inflamation that prednisone would help
Hope you are doing better now

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