... 2 and had a flare. Put back up to 50 and have now got them down to 7. Have spent all afternoon in hospital as pain in temporal left flared up and although that came back ok they want me to up steroids to 40 again as they say I'm showing all the symptoms of GCA again, does this sound right?
Chlobo, Sorry to hear you're going through flare ups and you have had to increase the prednisone again. I spent 26 months on it and since getting off the med 1 year ago I personally have not had a flare up. I have chatted with others who have and they were immediately increased to either 40 or 50 or 60 and weaned back down. It seems to come with the territory. We can control it and there are one or two other meds supposedly that can be used. Ask your rhumi as they know best. I hope with all the prednisone that you're on Alondronate also. You don't want your bones to be like swiss cheese.
By the way... I heard that there is finally a study on GCA in conjunction with PMR that is going on in Baltimore at Johns H's University. Maybe there is some hope. I've made it 3 years and 4 months and had one stroke 16 months ago that was on the cusp of mini to full blown. I got through alright.
I want to wish you the best. Hang in there!
I'll say some prayers for you.
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