I was a "lurker" until recently too... LOL
I can only relate my pred tapering story. I tried dropping 5 mg at a time (I was at 20 mg/day). It was disasterous. Severe headache, joint pain, fatigue (as if all those aren't enough with lupus!). Anyway, I asked for 1 mg pills so I could drop 1 mg at a time. Tried every two weeks and that seemed to work. Recently, I decided that I needed off of it faster (we celebrate our 25th anniversary this June - plus I have a son graduating from Penn State and a daughter graduating from High School). I didn't want my head to look like a satellite dish in all the pictures. I decided to start dropping 1 mg / wk rather than every two weeks. However, I'm wondering if that is backfiring on me because my joints are hurting (not unbearable) and I've had three migraines since January 1st. Most recently, today. So - I didn't do my prednisone drop today...think I'm going to leave well enough alone for another week. My sister has RA really bad - and she warned me that it took her eight months to get off of prednisone.
I was only diagnosed in July 2007 with lupus. But - the one thing I have learned is that you are the expert on you. If you haven't researched lupus and the drugs associated with it - please take the time to do so. Sometimes the docs get tunnel vision. I know the docs want us off of the prednisone ASAP. But, I'm learning my limits with that (although, I've been pushing the envelope lately). I get scared when I re-read about how prednisone shuts down the adrenal glands... Mine have been shut down for six months now...and my best case scenario is being off by the middle of April. Lynnwood's comment about sometimes the adrenal glands never start working kinda knocked me on my butt. Never occurred to me that they wouldn't start working again.
I do agree with the frustration of the weight gain and hunger. The other night I shoved 4 cookies in my mouth and then made brownies...then I sat down and thought WHAT THE HECK AM I DOING!?! I gotta get this figured out. I've never weighed this much - even when I was nine months pregnant!
Anyway - welcome again meeks.
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil