New here. Having the same problem right now! Started on 120 mg. prednisone, then over 8 mo. was reduced to 16 mg. But starting Dec 19th.....the rheummy scheduled me to reduce that amount by 4mg. every two weeks. Going 16 to 12 was o.k 12 to 8 a little tough, but the 8 to 4...oh boy! I went three days then I cheated and went back to 8 for two days and was ok. Then....back down to four and on the third day ended up in emergency room with extreme body pain and fatigue like I never had in my life besides the original onset. Right at this moment today, as per new prescribe, I'm back on 8 mg. and only noticed a small improvement. Now after reading this forum, I am a little concerned that I am indeed being reduced rather too quickly.
Yes, (usual 'I am not a doctor' warning) it does sound very quick. It took me years to get from 60 mg down to 10mg and years more to get from 7.5 to 5mg. Coming off pred is not nice at the best of times, but it does seem that WG reacts very quickly to lack of pred if it is still being active. At the same time, withdrawal symptoms are often similar to the malaise of WG.
I've been dropping down from 60mg every two weeks since October. Have just dropped from 15mg to 12.5mg and feeling ok but have noticed my joints are clicking more and I'm getting the occasional pain in my knee. My knees were the worst affected when I had the arthritic pains before being diagnosed, so I'm a little worried about having to drop down to 10mg on 11th Feb as I think I might start encountering problems.
Then again I suppose you have to try and just make sure the dose gets increased if you start to suffer. I don't know where I'm going after 10mg as I haven't discussed that with my doc yet but have an appt the day before I'm due to drop to 10mg.
Have your Rheumy drop it only by 1mg once you get to 15mg.
I sure wish I'd known you guys when I was going off pred. We were dropping it 5 mg at a time, I think, and my Wegs symptoms were going wild. The rheumy kept telling me it was all in my head. When I insisted it wasn't, he said it was a reaction to going off the pred. Anything but admit I was right! The worst doc I've ever had, that guy.
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