Inactive sarcoidosis

Chest and lungs
1

I was just recently diagnosed with sarcoidosis it is inactive. Has anyone else been recently Diagnosed with an active Sarcoidosis if so have you ever heard of anyone else have an in active sarcoidosis and it’s staying in active

2

I was diagnosed in 2015. Went back for follow up and there was no indication of it . The Dr never said anything about it being inactive, just that he saw no more sarcoidosis. I have not had any problems. I refused to take the steroids they offered.

3

  Thank you Dianne. They found over 100 granules is my lungs. I also have asthmatic bronchitis. I go to UAB now for 2 years I have a lot of shortness of breath. UAB is a research hospital like mayo clinic

4

Can anyone else comment on this I need all the info I can find on inactive and active sarcoidosis

5

Hi Carol

I was diagnosed with sarcoidosis very recently, within the last 6 month. Diagnosis is from many clinical features rather than biopsies.

Although recently diagnosed it's fairly certain from clinical signs and symptoms that I have had it for some years.

Can I help you with specific questions?

6

Yes 2015 inactive lung sarcoid, followed up for 2 years of pulmonary tests and scans and doctors believe I had sarcoid from early adulthood. Not needing any meds..... 2018 September was diagnosed with liver sarcoid and it’s active, liver byopsy proved..... my blood flow to my spleen is normal so no meds needed at this time I see a sarcoid specialist at Boston medical center 👍🏼 If blood flow was backwards doctors would have me on meds. I’ll follow up many times with specialists to keep close eye one it, I also once a month I need to have blood work done test my iron... irons been on the lower side. 

How’ve you been and where do you have sarcoidosis? Do you see a specialist? Feel free to chime in with me👍🏼

7

Yes I see a Dr at UAB Birmingham AL. I Have it in my lungs. I was told for 2 years that I had bronchiestasis. I got sick 1 month ago with a severe case of bronchitis. They did a bronscopy on me 3 was ago and found out I have inactive sarcoidosis. I also have asthmatic bronchitis also which the dr said I would neither get rid of it neither. 

8

How will I know if my sarcoidosis becomes active. I also have asthmatic bronchitesis that the dr said will never go away either. 

9

Active no but I was  diagnosed  8 years ago and what I have found out it affects everyone different. Which is a problem for the docs. I know finding a great  General practitioner that will help you and guide you thru this is a life saver. 

10

Chris thanks which dr do u see at UAB. I see Dr. Hassen. Are u taking meds for the sarc. 

11

I live in Washington State and I am to lucky to know how my body reacts so I know when to listen. Something I learned .  Also doesn’t work for everyone but Prednisone is the only thing that works for me