I was wondering how long you all have been diagnosed with sarcoid.
I also wondered whether you were expected to get better within two years of diagnosis.
Doctors seem to assume that their sarcoid patients will be free of the disease within two years. Most text books tell them that 70% of sarcoid patients will go into permanent remission within 6 months to two years. The ACCESS study on sarcoid says that the average length of the illness can be as long as 9 years.
I was diagnosed with sarcoid in 1999. I was told I would be free of the disease within two years. I was in an immunologists care for 3-4 years prior to the diagnosis because I was unwell, and had constantly raised inflammatory markers. So I would consider I had the disease at least that length of time prior to diagnosis. I was later told by my doctor that I would be in remission within two years.
While my symptoms did not seem to get any better, the hilar lymphadenopathy in my chest did resolve on the mark of two years. My symptoms continued to worsen despite this good news until in 2003 it was finally accepted that the sarcoidosis had returned and I was put on prednisone. Things settled for a short time, until my symptoms returned in February 2006 and it was confirmed in the September of 2006 that the chest pathology had recurred and worsened. Despite treatment my ACE is now double the normal range.
I was wondering how others fared with timeframes of illness and whether the two year theory had any baring on how they were treated. I have always found this "sarcoid is a two year disease" thing a barrier to being taken seriously by doctors.
What has been your experience?