These sound like almost the exact same problems I had while tapering. I lost about
half of my hair while I tapered. Luckily I have very very thick hair, so it wasn't a problem really, but it was frightening. It stopped falling out when I was off the pred, and now I have all of these hairs that are growing back in and not looking too hot as I try to style my hair.
I had terrible joint pain-just awful. It got better as time went by though. I will say that this spring, I had to take Canasa (suppositories) for a mild flare, in addition to my regular asacol, and that caused me excrutiating joint pain. I am ok with just the asacol, but that AND the canasa and I can barely walk.
My swelling issues have been slightly different-I would have a finger that would swell, or a toe, or the ball of my foot, or my wrist. It was really random, and moved around. That still comes and goes and I really don't know why.
Like I said, the hair loss was definitely due to the pred taper, and it stopped. So hopefully the same will be true of you! The joint pain diminished over time as I finished up with the pred-but it took a while. Exercise helped me.
I'm sorry you are dealing with these side effects. They are terrible!
34 years old, stay at home mom of 2 girls, ages almost 4 and 2.5
Diagnosed in 2007
Biweekly injections for Humira clinical trial-going well so far!!
Off of canasa because of severe joint pain (side effect)