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Inactive sarcoidosis

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carol66580
carol66580

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

1 like, 10 replies

10 Replies

  • diane22518
    diane22518 carol66580

    Posted

    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.
    • carol66580
      carol66580 diane22518

      Posted

        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
  • carol66580
    carol66580

    Posted

    Can anyone else comment on this I need all the info I can find on inactive and active sarcoidosis
  • m_m_h
    m_m_h carol66580

    Posted

    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?

    • carol66580
      carol66580 m_m_h

      Posted

      How will I know if my sarcoidosis becomes active. I also have asthmatic bronchitesis that the dr said will never go away either. 
  • Big_Mack
    Big_Mack carol66580

    Posted

    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 timesmile 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👍🏼

    • carol66580
      carol66580 Big_Mack

      Posted

      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. 
  • cris_b
    cris_b carol66580

    Posted

    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. 
    • carol66580
      carol66580 cris_b

      Posted

      Chris thanks which dr do u see at UAB. I see Dr. Hassen. Are u taking meds for the sarc. 
    • cris_b
      cris_b carol66580

      Posted

      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 
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