Originally Posted by WWWM
I was just diagnosed with boop also. I am having a hard time understanding what the real prognosis is. Is it a life long illness? will it limit my lifespan? will it lead to more serious ILDs? These are some of the questions i would like to get answers for. Boop lady How well did you feel when your boop is in remission?
ASC99YS How long has your dad been dealing with boop and what dosages? Is his boop related to anything else?
I am still on steriods (now since 1/07) down to 5mg daily. I stopped having "serious" side effects when I got down to about 15 mg, chest fluttering, not being able to sleep, nausea, stuff like that. I don't have a lot of answers about a prognosis of BOOP and it appears neither does the medical community. It can come once or return many times during your lifespan. It also seems that long term lung damage(scarring) is based upon how many recurrences you have. We should live forever, but will we need lung transplants further down the road, is a question. I have gained some weight, but at least my energy has maintained.