My wife has made remarkable progress since being diagnosed with SLE last year and suffering many years undiagnosed before this. This is thanks to a few expert doctors, a great GP and the brilliant pointers and help received on this forum.
But we have one stubborn and serious issue that wont go away.
Anytime my wife gets below 3 prednisolone per day she struggles to breath, her 02 sats drop, her blood pressure rises and heart rate increases to dangerous levels. She has had around 4 ct scans all clear and loads of lung function tests all clear as well. It is like someone restricting the lungs with pain at the bottom of the right lung going around the back.
Connective tissue disorder that doesnt show up on CT
Blood disorder ???
Grateful for thoughts and experiences of something similar to give some pointers of where to look next please.