Hi

I developed subglottic stenosis whilst in remission. I was in remission for 20 years and then developed symptoms including subglottic stenosis, I went on treatment and all was OK then after 3 years the subglottic stenosis got worse again and I had to have a dilation this was 18 months ago. I am still on lose dose steriods 5mg daily as maintenance dose and 2000 mg mycophenolate. I am hoping I don't have to have another dilation. I have a cold at the moment so breathing is not good but once the cold improves my breathing should.

I think subglottic stenosis is one of the worst symptoms of this horrible disease its so frightening when you can't breath, I ended up in emergency twice. Being on the low steriods seems to help and when I have a cough and cold I up them until the cold improves.