Interstitial Lung Disease Community Group
Interstitial (in-tur-STISH-ul) lung disease actually describes a group of disorders, most of which cause progressive scarring of lung tissue. This eventually affects your ability to breathe and get enough oxygen into your bloodstream. Beyond this, the disorders vary greatly (mayoclinic.com).
Well its not new to me but its the first time I've seen this paper by my doc :) you remember? The one who wouldn't treat me:
http://www.news-medical.net/news/20120901/Researchers-define-new-treatment-for-potentially-fatal-lung-disease-in-patients-with-CVID.aspx
http://www.news-medical.net/news/20120901/Researchers-define-new-treatment-for-potentially-fatal-lung-disease-in-patients-with-CVID.aspx
tinaunger50
thats great Kelli !! I hope your doing good.Im finally down to 5 mgs of prednisone and lungs are doing much better.(just in time for winter!) the weather changes have my joints flamming but Im praying my lungs stay inflammation free!
deleted_user
I am new to this support group. I have been battling CVID, ILD, and was diagnosed with GLILD in November 2013 with an open lung biopsy. I was diagnosed with Sarcoidosis in the early 1970's and was treated with prednisone off and on for over 40years. Now my pulmonologist and oncologist think I never had Sarcoidosis rather CVID all these years. I am being treated with Remecade infusions every three weeks. My O2 saturation is so low that I need 5 L supplemental O2 at rest and 6-8 L with activity. That has increased by 3L since November. I am looking for second opinion from a qualified pulmonologist or immunologist with experience in treating GLILD. Do you know of a doctor to refer me to? I live in Oregon, and have a Dr. Troy Torgerson from Seattle that I was referred to by Immune Deficiency Foundation. I would appreciate any help you can give me.
kelli1b
I am SO sorry for the late reply and I hope you get this message! A lot of people initially go to National Jewish. When I had a flare the second time they told me "now we don't do anything, we just wait and see". Well I never went back. I asked around and a lot of us go to Dr. Routes in Wisconsin (he actually used to work at National Jewish). I know of at least 6 people who go to him and he has even published a paper on it with his research on using a combo of 2 chemo drugs (Rituxan & Imuran). Feel free to message me anytime. This board doesn't get much attention since there aren't many of us!
deleted_user
If it is closer for anyone, Dr Avni Joshi at the Mayo Clinic in Rochester Minnesota is very involved in this new treatment protocol. She has 7 people on it currently.
kelli1b
That is excellent, 7 is a big number!!
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