Now what?

dorri · 01-20-2005, 08:55 PM

I've been on prednisone for years due to a chronic illness. After surgery (2years ago) I was weaned off prednisone in October. What followed was horrible joint and muscle pain. (feels like every muscle is pulled or sprained)This went on for a good part of the year. I visited a rheumy in August, and he said it was from withdrawing from prednisone and said that my adrenal gland was asleep and was reacting with arthralgia and myalgia because I was weaned off improperly. So he put me back on 10mg for 2 weeks, 7 1/2 mg for 2 weeks, and then to 5 mg. I felt great on 7 1/2 mg. The pain went away. It was so appreciated to be pain free after months of agony. He told me to remain on 5mg until the end of January and wean down again. Apparently the prednisone now comes in 1 mg's. So I'm to take 5 mg one day, 4 mg the next.

I am still on 5 mg, but over the last couple of weeks the pain is returning. As I write this, I am in tears because it hurts so bad. Will I ever get off prednisone? Has anyone else been on long term prednisone, and is having trouble withdrawing?

dorri · 01-20-2005, 10:32 PM

Chris, thank you for the great advice. I've been wanting to approach my doctor on this, but thinking maybe he'll think I just want to stay on it. Sorry, I didn't make my tapering clear. He wants me to taper from the 5, and then 4 on alternate days for 2 weeks, then 4mg for 2 weeks, then 4 mg and 3mg on alternate days etc...for 2 weeks until off completely. He did say, the sleeping adrenal could be a temporary thing or a permanent thing, so hopefully they will continue to monitor me.

WandaB · 01-21-2005, 04:52 PM

Dorri, How many years have you been on Prednisone? I agree with Chris on the tapering. It just cannot be done quickly. Your adrenals may be atrophied from long term Prednisone use. I do wish you success with your taper.
Wanda

dorri · 01-21-2005, 10:59 PM

Thanks again Chris and Wanda. In answer to your question Wanda, I've been on prednisone for 25 years to treat Crohn's disease. Over the course of those years, I've been up and down in dose, ranging from 40 mg and down. 5 mg, was my usual maintanance dose. Unfortunately, most of the time this amount was not enough to prevent inflammatory flaring, but my joints and muscles were never affected with pain, until I was weaned off completely, and now again as I am going down again, but still not as bad as before. The last thing I need is more pain. This pain feels like a hot, burning, aching pain and like I mentioned before like a body of pulled muscles, summer and winter, it makes no difference. I'll take this up with my doctor in a couple of weeks when I go to visit. Chris, you mentioned going up to 7 1/2 mg, but what if this keeps happening each time I try to wean down. Before I had months and months of continual pain with no let up, until the rheumy put me back on prednisone, so is this what I'm going to have to go through before I can wean off..????

Thanks again for the replies.

dorri · 01-22-2005, 12:35 AM

They want to wean me off because I developed steriod induced osteoporosis. They put me on actonel, which is supposed to help. Funny thing though, when they took me off prednisone completely, my bones FELT in lot worse shape. I never had pain before. I felt better, with less pain when they put me back on the prednisone. I hate to see my bone density test now that I've been through this painful ordeal. It's probably worse...it gets so complicated. groan....