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pulmonary issues?

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#1 kmbhoya2000



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Posted 25 August 2009 - 02:04 PM

I have been diagnosed with Eosiniphilic Fasciitis for 16 years. I have just had a major flare up and due to several different issues, my rheumatologist is concerned that it has morphed into scleroderma. So, I had a bunch of tests done. So far, the swallowing test was normal, the High Res CT scan was fine. I haven't heard from him about the PFTs and the echo & EKG. I know though that the first 2 tests on the PFTs were good (94% predicted) but the DLCO, gas exchange test was low (73% predicted). I have noticed that I don't feel like I am getting full breaths, but I had written it off to asthma which I have had forever.

Have any of you had normal CT, but a low DLCO??


#2 janey


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Posted 25 August 2009 - 04:18 PM

It's interesting that bring up Eosinophilic Fasciitis. I wasn't familiar with it until a couple of weeks ago. We recently added a new abstract to our EF and scleroderma section that you might find interesting. In reviewing these abstracts and others, I don't really see a direct connection between EF and sclero, so it will be interesting to hear what's going on with you. Please keep us informed.

In reference to the normal CT and low DLCO, I had that situation for several years. My DLCO has continually been dropping, but my HRCT's havent shown too much of a problem. I've have 2 normal ones, then 2 years ago it showed "slight scarring in the lower lobes". I had another done last week, but I haven't received the results. Over 5 years my DLCO has dropped from 80 to 35. I'm no doctor, but it's quite possible that your breathing problems could be due to your asthma. Please let us know what you find out.

Big Hugs,
Janey Willis
ISN Support Specialist
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International Scleroderma Network (ISN)

#3 summer


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Posted 25 August 2009 - 07:08 PM

Hi Kathleen,

I have limited Scleroderma/Crest, have been diagnosed since 2007. I have very similar results on my PF test as well. My DLCO , baseline test in 2007 was 87%, it is now73% and stable. I haven't had a PFT test since last year, so I will be interested, what the outcome will be. I will be having another one shortly.
I also have shortness of breath on exertion and it hurts to breathe at times. I am seeing multiple specialists for my condition.

All my Chest xrays and Ct's of the lung are normal.


#4 kmbhoya2000



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Posted 26 August 2009 - 06:15 AM

Thanks for the replies...I will keep you updated...