Thursday, July 22, 2010
Day 106 through 108 Searching
I'm still here. Sorry I'm not very motivated to write much lately. I'm still searching for someone with Behcet's that has the same pulmonary disorder and still haven't found anyone. I did find a girl that is taking Imuran though. She isn't taking it for her lungs but she says it has helped with her symptoms and other then her hair falling out she is very happy with it. Luckily my hair isn't falling out but frankly I wouldn't be too disappointed if it did. My hair is really long and black, this time of the year it's super hot and in the way. Hope you are all having a great summer.
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Hi Annie,
ReplyDeleteI'm curious what pulmonary disorder you've got with your BD. I've had Behcet's for the last 30 years. I developed BOOP (bronchiolitis obliterans organizing pneumonia) last November and was in the hospital for 8 days while the docs messed around and tried to figure out what was wrong with me. Ugh. Pred is the only drug that helps BOOP (unfortunately) and I'm finally tapering off it, although my lungs now have some permanent scarring. Thank God the top BOOP specialist in the world is about an hour from my house. He actually named it, in the 1980s ;-)
I have this picture hanging in my cubicle at work: "Lungs: Now available in four colours." You can see it here:
http://www.marcjohns.com/blog/2010/01/lungs-now-available-in-four-colours.html
It cheers me up :-)
Anyway, I've got a blog, too -- it's called "Essential Behcet's" at http://behcets.blotspot.com, and a website at http://www.behcetsdisease.com.
Hang in there,
Joanne Zeis
joanne at behcetsdisease dot com
Hi Joanne. Thanks for commenting on my post. My lung disorder is being called 'Restrictive Lung Disease' which basically means they aren't working like they are supposed to and no one knows why. I have had 2 CT scans and xrays galore. The only thing left to do is a lung biopsy but I'm not going to think about that until we see how they are doing in September. I don't have any scaring or at least the CT scan didn't show any. I have a low diffusion capacity which means my lungs aren't processing/exchanging the gases being drawn in.
ReplyDeleteHi Annie,
ReplyDeleteThanks for filling me in a little more. The type of lung problem that I have (BOOP/pneumonitis) is one of several forms of restrictive lung disease. It can be caused by radiation treatments (like I had for cancer) and/or by pulmonary vasculitis -- as well as by Behcet's and other collagen-vasculitic disorders. The specialist that I saw last month in Boston also told me that Behcet's is known to cause BOOP and other types of lung issues like you're describing.
Here's the abstract from an article that mentions diffusion capacity and Behcet's (the starred areas were marked by me):
Nihon Kyobu Shikkan Gakkai Zasshi. 1993 Apr;31(4):480-5.
[Usefulness of DLco for the early diagnosis of pulmonary involvement in collagen
diseases]
[Article in Japanese]
Gabazza E, Taguchi O, Yamakami T, Machishi M, Ibata H, Suzuki S.
Collagen diseases are chronic multisystemic disorders affecting many organs.
Pulmonary involvement is frequently associated with these collagen diseases. The
usefulness of the diffusion capacity of the lung for the early detection of
pulmonary involvement was assessed in 182 collagen vascular disease patients. In
addition, the clinical characteristics of those patients with pulmonary lesions
were also evaluated. Among these, there were 69 cases of chronic rheumatoid
arthritis (RA), 39 progressive systemic sclerosis (PSS), 24 systemic lupus
erythematosus (SLE), 12 dermatomyositis-polymyositis (DM-PM), 12 mixed connective
tissue disease (MCTD), 11 Sjögren syndrome (SS), 9 Behçet's disease (BD) and 6
unclassified connective tissue disease (UCTD). ***Patients with normal chest X-ray
but with pulmonary dysfunction were recognized in 56% of RA, 59% of PSS, 50% of
SLE, 50% of DM-PM, 71% of MCTD, 33% of SS, and 50% of BD cases. *** Moreover, a
higher degree of immunological abnormalities was observed in those with pulmonary
complications. ***From these results, we conclude that diffusion lung capacity is a
useful index for the early diagnosis of pulmonary involvement in collagen
vascular disorders.***
PMID: 8515621
You also may want to take a look at this article on restrictive lung disease, from Nursing2008:
http://www.nursingcenter.com/pdf.asp?AID=806012
eMedicine also has a good article on restrictive lung diseases. You can see it here:
http://emedicine.medscape.com/article/301760-overview
Hope that helps!
Joanne
Wow...thanks for the great info, I think I may have found this article in my research also. I've actually stopped researching things for now as I become very anxious and worrisome about what I find. But I really appreciate your help though!
ReplyDeleteI also have Behcet's and have developed BOOP.I was diagnosed with Behcet's when I was 21 and then developed BOOP which almost killed me. It has been 12 years now battling BOOP. I have taken Imuran and Cyclophosphamide treatments which has helped but still I am not going to stop looking for something that will stop this process.
ReplyDeleteI am currently researching the role of vitamin D deficiency in chronic disease and feel this may be something valid with my diseases. There is a current article Dec 2010 in Chest magazine that seems promising.