I came here looking for the exact same information. Should you find any would you please let me know. I have gone to a couple of links, but they don't really get to the heart of the diagnosis and prognosis.
Rheumatoid arthritis and Lupus are mentioned lots, but my family member has asthma, neither of those other two. She has been on steroids and asthma meds literally all of her 49 years. She also has blood clots in her lungs and was taking medication for those. She's now also on oxygen.
Any help anyone could give on this subject would be greatly appreciated.
Hi, thanks for your comment. I have lived with asthma all my life & i have never gotten as bad as the family member you are talking about, but i do know that things can get real bad for some people. If I do get any info on the topic you are after then yes by all means will i pass it on to you. I also have been to alot of sites but i'm the same i got nothing out of them either. This is why i am currently on this site but again to no avail have i got anywhere with the information that i do want. Even friends that i do have, have never heard of Shrinking Lung Syndrome. If you get any information at all can you please pass it in to me as this is getting frustating.
I agree there is not alot on Shrinking Lung Syndrome,I have been searching the web for the last 18 months. I am not a dr or medical student I am just someone who has been diagnosed with Shrinking Lung Syndrome. If I can answer anyones questions about my experience then I will.
I have been diagnosed this week with SLS After months of tests Its a scary thought as it sounds so drastic. I was diagnosed woth SLE Lupus back in October and feel as if I have been on a rollercoaster ever since. Lung investigations have revealed that I have had TB in the last 3 years which has caused calcification in my right lung (Which is also the lung worse affected by the Shrinking Lung Syndrom) so its a scary time all round. I have been on Prednisolone since Oct starting on 40 mg I am on a reducing prescription & am now on 20mg. I am on an increasing prescription for Azathioprine and am now on 150mg per day. I have been advised to try some light exercise and was thinking of starting a walking programme What are the experiences of others in managing this disease and how did it affect their overall health. I am now totally paranoid about getting chest infections as in the past I have had pneumonia, pleurisy & bronchitis.
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