Steroids

[jimbo1605]

I posted a few months ago about my wife's breathing problems. This is an update.Wife age 64 diagnosed with sle six years ago. She is currently on hydroxy, azathioprine and lots of steroids up to 40 mg.

In the last six months she had a ruptured calf muscle, 3 spine fractures and severe breathing problems causing hospitalisation twice.

The common cause is believed to be steroids at high levels.

Steroids are amazing drugs and my wife wouldn't be here without them. But like all medication they have unwanted effects. Please take expert medical advice and consider side effects.

[Spanielmadlady]

I've been steroid dependent for 10 years now as pred is the only drug that keeps my breathing issues under control. In those 10 years I've frequently needed 40 mgs that takes 6 months to taper down. I had 5 falls last year and I've currently got a torn ATFL ligament and a broken elbow both needing surgery.my dexa scans which I have regularly are good.At a recent appointment with a different respiratory consultant he came to the conclusion that my Lupus affects my muscles causing dysfunctional breathing. So my question which none of my medical team seems to be able to answer is " if my lupus affects my breathing muscles is it affecting other muscles and contributing to my falls ? " 🤔. I'm not expecting an answer here BTW. Certainly food for thought.

It just goes to show how differently our Lupus affects us and how differently these drugs work for us .

Best wishes to you both .SML ❤️ xx

[jimbo1605 in reply to Spanielmadlady]

Thank you so much for your reply.

My wife relied upon steroids and they always improved her breathing and there was nothing better to control a flare.

Her recent poor breathing has been attributed to fat build up on her back which was pressing against the lungs. In addition the tissue and muscles around the lungs were more brittle and less effective.

I agree totally we are all different and I must emphasise steroids are an amazing drug for lupus. But they are not without side effects.