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    Shriking Lung Syndrome
    anowlin posted:
    A good 10 years ago, I began getting short of breath, but it was sooooooo subtle, but not so subtle that I couldn't notice it. Everyone said that 'of course it's so, you've just been diagnosed with lupus, you've been in the hospital and YOU'RE OUT OF SHAPE! (I was an athlete).

    The shortness of breath progressed and after ruling everything out under the sun, successive pulmonary function tests showed that since I was negative for everything else: Shrinking Lung Syndrome was the diagnosis at an autoimmune disease lung clinic.

    I started Cell Cept in May, my pulmonologist said that in SLE, it works in a few weeks, but in Shrinking Lung, the doc said the EARLIEST he even thinks of looking for results is 3 months. In the meantime, my anxiety level is sky high, my SOB continues to progress and just a short shower does me in for 1/2 hours.

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    How many of you have lung problems from lupus or sjogren's syndrome?
    • I have Shrinking Lung Syndrome
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    R Swamy Venuturupalli, MD, FACR responded:
    Thank you for your post. Shrinking lung syndrome really refers to a restriction of the lung from being able to fully expand and get filled with oxygen. This is seen in lupus and other autoimmune diseases. As you said, we need to rule out every other cause of shortness of breath first. Essentially, in shrinking lung syndrome, there is scarring of the pleura (the outer covering of the lungs) and this is thought to be due to previous inflammation of the pleura, which is seen frequently in lupus. In addition to controlling any inflammation, pulmonary rehabilitation may be helpful in maximizing lung capacity and training the body to use accessory muscles (those that are not used for normal breathing) for improving respiration. Most cases of shrinking lung thankfully are not progressive.
    anowlin replied to R Swamy Venuturupalli, MD, FACR's response:
    I don't understand, You say that most cases of SLS aren't progressive, but I did not receive the diagnosis until successive PFT showed the TLC and ________were decreasing on a CONSISTENT basis.

    Currently taking CellCept and some days it''s all I can do to walk across a room. I'm trying to exercise and do so with the assistance of an exercise physiologit who knows how to maximize pulmonary gains without compromising osteonecrosis.

    I see docs at National Jewish health in Denver who are considering adding theophilline to my regimen. But theophylline interacts with so many meds and I'm on a ton.
    R Swamy Venuturupalli, MD, FACR replied to anowlin's response:
    You are at one of the best institutions for this kind of condition in the country. I am also glad to hear you are exercising with a physiologist. Deep breathing exercises may also help exercise your accessory breathing muscles and in turn increase lung capacity.
    The scientific literature suggests that the long-term prognosis is good, with improvement or stabilization of lung function over time and hence my comment. Immunosuppressive therapy could also be helpful in stabilizing SLS and improving respiratory symptoms and PFT in some cases and hence your doctors are using cellcept. Rituximab and corticosteroids may also be effective in the treatment of SLS.
    anowlin replied to R Swamy Venuturupalli, MD, FACR's response:
    Because the lupus, or steroids have cause osteonecrosis in nearly all joints and the Shrinking Lung Syndrome prevents any kind of exercise except the exercise with the ex physiologist. I've become so sedentary, to sent arty and my weight is nearly 100 # higher than it was 10 years ago. It's a caches. I need exercise to assist in weight loss, but I cannot exercise because of too much pay or too much SOB. BMI THRITY SEVEN-that was never to be me.

    Last year I tried weight loss of nutrisystems and lost nearly 30 pounds. That was not a problem. Now, with no more money in the 'till' It's salads, salads, salads, and lean cuisine. Lance Armstrong's 'livestrong' was all that I need
    engloorey replied to R Swamy Venuturupalli, MD, FACR's response:
    hi. This Imran Ahmed....My father has a same problem. his age cross to 72 and he is having problem to take full Xray report shown that he is down with phenomenia... he is high blood pressure and diabetic with both knee's replacement...Doc advise him to take Tinem 1 g or Injaction TANZO 4.5 g thrice in a day and use strariods 3 time in a day.....

    what would suggest in this condition...?

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