I have lupus and have be diagnosed with the early... - LUPUS UK

LUPUS UK

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I have lupus and have be diagnosed with the early signs of Fibrosis (hardening of the lungs) of the lungs.

artgirl profile image
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I also have Arthritis, Crohns disease, oesteoporosis, dry eyes and mouth. Just interested to know how others, manage fibrosis of the lungs. Thanks.

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artgirl
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anne59 profile image
anne59

I have had Lupus for 19 years and was diagnosed with Pulmonary Fibrosis almost 3 years ago. I've been well controlled on a triple therapy of Steroids, Azathioprine, and n-acetylcystein. Last month my LFT were abnormal and this has resulted in me having to stop the Azathioprine until things improve. The main thing is to keep your Lupus as well controlled as possible to help prevent any further deterioration in your lungs, and keeping as active as possible, swimming being ideal for the lungs and joints.Anne

artgirl profile image
artgirl

Thanks Anne59 for your answer. When I was diagnosed aproximately six years ago I had a cough and was told it was asthma. Following this I have been seen by a consultant on a yearly basis for the last three years. This time the lung function test showed a drop in gas transfer so the consultant said he is worried that the Pulmonary Fibrosis may get worse, which I did not know about etc.

The problen is I had to stop the azathioprine last November because I was getting to many chest infections and infected skin, white cell count was to low. I am now on steroid low dose, inhalers and hydroxychlooquine. Is your gas exchange lowering little by little? I use my cross trainer and static bike for exercise. Stuck for transport because I had to hand my licence back because of some fits.

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