Prednisone Withdrawal

[Sally]

Polly asked me to elaborate a little on the troubles I had with prednisone withdrawal so here it is.

The first symtom of pred withdrawal was when I tried to reduce my dosage and got to 16 mgs/day, The D returned in full force. Awful. Then my doc would up my dosage again and everything would be fine for a while until I got to 16 mgs/day again. In order to keep me out of the bathroom 24/7 I kept on the pred until Entocort was released in this country. FINALLY.

I started Entocort immediately (9 mgs/day) and started the long slow process of weaning myself off pred. The rate was about 1 mg/every two weeks. I was taking it REALLY slow because I had been on it for over three years at an average dosage of 20 mgs/day. I wanted to give my adrenal glands time to "wake up." When you take pred for any length of time they tend to get lazy.

It was a great day when I finally passed the 16 mgs/day point. I did not have any D so I went on decreasing.

When I got to 5 mgs/day, the symptoms of withdrawal began. Severe pain in all my joints, but especially on the tops of my feet. That was almost unbearable and there was nothing I could do for it. I asked others who had been on pred for a long time and who had kicked it about their symptoms and they all agreed that the pain on the feet was the worst. My doc was no help because she had never run into this in her practice.

This went on for about a month and then the pain started to decrease. The fact that I kept going through this is a testament to how badly I wanted to kick pred. I finally ended up going to a support group for people who were trying to kick heroin, meth, crack, etc. They were very helpful to me and had also, some of them, been through the prednisone thing.

So prednisone withdrawl is very real, but don't expect much help from your doc. This is not for people who have been on it temporarily, by the way. It is only for us hard core users who have been on it for years. Be prepared.

Lots of love,

Sally