Pulmonary Sarcoidosis: How are you dealing with it?

I was diagnosed with cardiac sarcoidosis in 2016 after Prednisone it is inactive. I think it's flaring up again. Does anyone has this condition, what symptoms do you experience

Hi @suscros68,

I moved your message about cardiac sarcoidosis to this discussion as I thought it might be easier to connect with others who have a similar diagnosis. For instance, I noticed that @riverotter has also recently written about cardiac sarcoidosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I hope you find this information from Mayo Clinic helpful as well:
– Cardiac sarcoidosis: A heart under attack https://www.mayoclinic.org/diseases-conditions/sarcoidosis/multimedia/cardiac-sarcoidosis-heart-under-attack-infographic/ifg-20405629

@suscros68, what symptoms have you experienced? Do you know what could be probable causes?

Sarcoidosis. Lung Nodules
Would love to chat with anyone that had/has this condition

Hi @sharonp51, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about pulmonary sarcoidosis. I did this so you can meet other members like @suscros68 @martindale @sarcoidosis @estrada53 @bboxer @chesneydell1965 @riverotter @ryman @irene5 and more.

Here are additional discussions you may be interested in:
- Sarcoidosis https://connect.mayoclinic.org/discussion/sarcoidosis/
- Small lung nodules: How often should they be scanned / monitored? https://connect.mayoclinic.org/discussion/lungs/
- Lung nodules & scared! https://connect.mayoclinic.org/discussion/lung-nodules-scared/

Sharon, can you tell us a bit more about you? When were you diagnosed with sarcoidosis? What treatment have you had? What is your biggest challenge or concern at this time?

Hello ! I was diagnosed 2017. I had a lung nodule and was sent for a PET scan. The only thing that “lit up “ as the nodule It was then suggested to remove/biopsy the nodule. I had an upper lung Lobectomy, apparently the nodule was located in an area that couldn’t be reached. This nodule was biopsies and found to be an inflammatory granuloma, send for culture, took 6 weeks and grew nothing. (I should mention I have multiple inflammatory conditions). I have no lung symptoms other than shortness of breath from Childhood Asthma
I had a repeat scan after 9 months and it was clean, then 6 months later with new tiny lesionsI then 1 yr later, i have another nodule, 15x17mm same lung, only lower spot this time. I was put on a round of prednisone and “asked” if I wanted a bronchoscopy or repeat CT scan in 3 months. I am not a Dr, so I am contemplating finding a new one or deciding what to do.

I have not been able to gain weight, and have no appetite
Diagnosed 2017

yes and now I'm anemic maybe due to an illiectomy over 50 years ago. Have had lung probs. too and also now I have high potassium so on a low potassium diet. Have lost weight and have had a prince metal heart attack over 40 years ago. Now doctor is cking on many things. Also have stage 3b kidney disease.
Sarcoidosis was discovered over 40 years ago. Only thing I know is that it has affected my lungs and have had some bronchial infections at least twice before. I am wondering how much of all my problems are due to the sarcoidosis.

I think it was after my prince metal heart attack so that would have been in about 1990 or 91. The dr. just ordered a CT scan of my lungs and I just got the report today. It says "1. Findings of COPD. There is centrilobular emphysema and large AP diameter. In addition there are patchy areas of air trapping seen on the expiration images. 2. There is prominent scarring in both lung apices and mild scarring peripherally elsewhere in the lungs. These findings are only mildly worsened compared with 2015. There is mild associated bronchiectasis in the lung apices" It then also said there is no mediatinal lymphadenopathy. also said there are no difinite new nodules, infiltrates or effusions. Also said that a dye was administered - but I did NOT receive an IV dye.

@sds, you're so right. Looking at this article from Mayo Clinic underlines that sarcoidosis can affect almost every system in our body, which can make it challenging to diagnose.
- About Sarcoidosis https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358

You mention a couple of conditions for which there are specific groups in on Mayo Connect that you might be interested in following:
- COPD https://connect.mayoclinic.org/group/copd-chronic-obstructive-pulmonary-disease/
- Kidney Disease https://connect.mayoclinic.org/group/kidney-conditions/
- MAC & Bronchiectasis https://connect.mayoclinic.org/group/mac-bronchiectasis/

Have you discussed the findings of the CT scan with your doctor? Did you correct the error about the dye contrast not being used? What next steps did you discuss with your doctor?

Hello
My sister was diagnosed with sarcoidosis years ago. She is my younger sis and we were all very concerned for her. She has had only her lungs affected be this horrible disease so far. She is in methotrexate, and predisone on and off over the years. When I mentioned to my PCP, at the time she was diagnosed, she said there were some talk amongst some drs. that there might be a link to being exposed to pine trees. And we were all living around them all our lives. Has anyone ever heard this before?? good luck to you all