We have been trying to wean me off the Prednisone and just go with the cellcept. I have gotten down to 20mg a day down from 40 over a period of three weeks.
I really want off the Pred.
When I first went down to 30 I had some small things spike. Now I am down to 20 and at first small things poped up, but I ignored them. I could handled it and waited it out.
First I became tired - started to go to bed at 7 PM, thought it was the down from Prednisone
Then my breathing became difficult, couldn't bring in enough air through my nose though it was clear, the only way to breathe was through my mouth. People kept telling me I was huffing and puffing when I talked.
I was still stubbun and waiting
Today I was in a fog, my nuero symptoms came roaring back, twitching, tremmors, speach is toast, totally distorted thinking, like thinking through a head full of cotten. My hearing and eyesight is acting up. I noticed a huge rash on my neck and ears, bright pink like I was in the sun all day and I think that leg Vasculitis rash is back, or at least it looks like it.
Lungs really heavy now...tight.
I just went up to 30 again, bah. I will have to call the doc tomorrow if I get a chance but I am so bummed. I know he wanted me up to 40 if anything happened, but I would hate to lose that ground.
Now I have to wait until it calms down.... bah....
I was doing so well..
Don't you just hate that..