Hi all. I am still getting used to the various respiratory issues that have arrived in the past couple of years. I am 47 year old, fairly fit female with longstanding mildish lupus for which I take low dose prednisolone, Hydroxychloroquine and Mycophenolate. I also have Eklira and Flutiform inhalers for narrowing of the small airways. I have some areas of 'tree in bud' in both right & left lungs and also get aspiration of food/saliva etc & laryngospasm
I have been diagnosed with diaphragmatic weakness which causes me lots of breathing problems when fatigued, lying and sitting down etc. This can be intermittent and it seems likely that this is caused by the lupus (neuropathy or myopathy) in the absence of any other explanation. In an email to my GP, my Consultant is suggesting managing this by diaphragmatic pacing unless I opt to continue 'surveillance'. I would love to hear from anyone with knowledge/experience of the pacing procedure so that I can be fully informed when I next see him. The lupus is behaving well at the moment but my shortness of breath is impacting more and more on my overall functionality. Spirometry in August was deemed normal at 82/83%, repeat tests due in March.
Any thoughts please?? Clare x