interstitial lung disease

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macns
New Member


Date Joined Dec 2010
Total Posts : 1
   Posted 12/12/2010 2:34 PM (GMT -7)   
Hi!
Diagnosed with ILD and treated w/ predisone. for almost a year . almost finished w predisone 2.5 mg but ild not any better. pft still about the same. was told by pulmanolgist this week should have new lung but am too of a risk -heart too. hospital university of penn said pittsburg might be an option, but
I feel that if i'm that high of a risk I might be better off just loosing weight and continue with pulmanary rehab . Any suggestions greatly appreciated.
thanks
CHARLIE

Blue Wisteria
Regular Member


Date Joined Sep 2010
Total Posts : 39
   Posted 12/12/2010 5:20 PM (GMT -7)   
So sorry to hear this. I, too, have been diagnosed with ILD...anyway my therapist told me that you can strengthen your lungs with one step at a time and just increase it every other day.... I am not doing to badly. 2.5 pred is really low...is this your maintance dose? Plus, what other meds are you on?

I sit in chat, I would be happy to have you join me.....
Wishing a good day for all,



Lupus, Sjogren's, Athsma, Diabeties and RA

Plaquinal, Immuran, Rituxian, Pred, Cymbalta, Singular, Theophylline, Advair, Diovan, Mobic, Prandin, Lantus and Moraphine (as needed)

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 12/14/2010 6:09 AM (GMT -7)   
Good Morning and Happy Christmas all,
I have sle and ashtma and am often in a spiral of acute sob and neuro symptom flares. I had a good discussion with my rheumy that I believe in quality of life vs length and agree that one step at a time and pulmonary rehab are good ways to go. I am often surprised that my pf function tests aren't better. My gold standard is ........if I can TALK, I can breathe yeah Weight loss and better nutrition are two of my ongoing goals. I live getting by when my prednisone gets weaned down to 5mg a day, and feel wonderful and energized without joint pain or neuro symptoms when I am taking 40mg. My high doses are reserved for when I am sick enough to go to the hospital. It's the respiratory infections that do me in. My bone density con't to drop, so we are trying to ward off osteoporosis from the chronic prednisone use.  I have lost 29 pounds even with prednisone, but did it the hard way being sick. I am a strong believer in the benefit of good, balanced, nutrition and try to limit calories. It is tough being a carboholic, for sure.
hugs,
suetoo
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