Reply To: Exacerbation – scared

June 3, 2012 at 12:01 am

I am sorry to hear you are struggling right now! I share the concern of previous posters that if there are any issues with breathing or heart rate you should seek medical attention immediately- I have been where you are and had many relapses due to colds/infections – some I was hospitalized for as I would get short of breath and rapidly lose ability to walk and some were dealt with as outpatient getting 5 day loading doses of IVIG ( in addition to my maintenance IVIG) not fun! Also one time I had a relapse we were traveling in Jackson hole and Yellowstone ( with a cool 3 wheeled wheelchair no less) and I used a high dose prednisone taper as an emergency rescue. I do not tolerate the side effects well and do not want to use long term, but it works very quickly for me and is helpful in a pinch- – have your doctors tried you on prednisone or solumedrol ever? I am thinking of you and wishing you well.