constrictive obliterative bronchiolitis

[SassySharon]

is this disease going to take my life in the next few years or am I headed for a lung transplant.  Was diagnosed in July with this from The Mayo Clinic in Scotsdale, AZ and fron St Luke's Medical Center in Houston TX..I have a great team of doctors.  Pulmo, Rheumy, Cardio, Sleep Apnea, Infectious Disease, Etc.  They are saying this form is extremely rare as it is connective tissue variety and may be related to Sjogren's.  In fact Sjogren's was brought up in the Path report from The Mayo Clinic several times.  Since the open lung biopsy, I have been in the hospital twice...once a possible infection that had me very sick, they did a lung wash and found nothing...  This last time i had a huge pneumothroax and another while in the hospital...I hate to ask my doctors the question of this taking my life and how soon.  I am on prednisone that we are weaning off and Cellcept 3000 mg per day.  It was considered in the mild to moderate stages, but the docs are not sure how this should be treated.  no studies have been done on this and am kinda in limbo....thank you ~sass~

[Dr Santos]

Hi,
How a re you? According to one journal at Pubmed, it  is possible for newly diagnosed cases  at an earlier stage to have at least stabilization of progression of such condition.  While this is a rare condition, you can check  the article and the authors at this link: http://www.ncbi.nlm.nih.gov/pubmed/9845757
Hope this helps.  Take care and best regards.

[SassySharon]

Hi,  
It has been a while but I am still hanging in and determined to beat it. I am so sorry that I never replied to you.. I have spent a great deal of time in the hospital or dealing with my elderly Father.  I am just now starting to get on my feet.  Thank You for the article.  We are still treating with Cellcept after finally being weaned off of high doses of prednisone.  horrible side effects...

~sass~

[Mednot]

Hi Sassy

Sorry to return to a very old thread, but hope you don't mind a couple of questions?
Can I ask how long you were taking the cellcept before you saw the progression of the disease slow/stop?
With the sjogrens has the cellcept helped?
Thanks