Reducing prednisalone makes breathing worse

[Jomo46]

I have pulmonary sarcoid fibrosis of lungs. I am on mycophenalate and steroids. I started with 10mg prednisalone a day, but since December have been slowly cutting this down. I am now on 2mg a day. I have read other posts of withdrawal symptoms of fatigue , pain etc. I am lucky in that I don’t seem to get this but it seems my breathlessness gets much worse for about a week,. The other symptom I get is hot legs, or if worse, legs and torso when I walk round in a t shirt when others are in woollies. Does anyone else get these side effects. ? I cut down the dose about once a month. Has anyone found a way of helping the breathless ness which I am sure, like others I find so frustrating.

[sassy59]

My husband Pete was diagnosed with sarcoidosis in 1991 and started on 30mg of pred. He has, over the years, managed to get down to 10mg per day but no further down than that.

Perhaps you need to speak to your doctor and explain how you are feeling. I wish you well. Xxxx