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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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 28, 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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Welcome @454june3736. Fatigue is a challenge. Will you taper off prednisone? What are the implications of kidney failure? Dialysis?

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JuneAnn | @454june3736 | Sep 29, 2023
In reply to @shar1120 "Has anyone had/have sarcoidosis? Each CT scan is good then bad as far as nodules. This..." + (show)
@shar1120

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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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.

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JuneAnn | @454june3736 | Sep 29, 2023
In reply to @irene5 "I am sorry you have sarcoid. My husband has it and was diagnosed in 2001 when..." + (show)
@irene5

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

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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 🙂

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irene5 Irene Estes | @irene5 | Sep 29, 2023
In reply to @shar1120 "Has anyone had/have sarcoidosis? Each CT scan is good then bad as far as nodules. This..." + (show)
@shar1120

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

Jump to this post

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

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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

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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.

Jump to this post

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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