marknyc

I just saw some of the notes from people on chronic prednisone, and wanted to share my experience. I do not have Lupus, but have a similar disease called sarcoidosis which is also controlled by prednisone.

After being on daily prednisone for years, I experienced all the classic symptoms people here write about, and was very frustrated, since I couldn't get off it. But then I found the answer: alternate day dosing (ADD)!

You see, many of the problems of prednisone happen the drug it shuts down your adrenal glands - when they're not functioning, all kinds of problems creep in. But if you take it every other day, your adrenal glands kick in and the problems go away! Since being on ADD, all my prednisone symtoms have gone away, and I am symptom free, even though I now take a higher dose of prednisone (went from 5mg a day to 15mg every other day).

But you may ask, "How can I switch to ADD?" First, let me tell you it is not easy. And I don't know for sure that it will work for Lupus, but I think it should. The secret is a hormone called ACTH, which restimulates your adrenal glands. It's an injection that I took for just a few weeks to kick-start my adrenal glands when I first went to ADD.

For me, the off-day initially was pretty rough, but after a couple of months, my newly-vitalized adrenal glands were able to handle my sarcoidosis on the off day. But I needed plenty of Advil to get thru that off-day at first!

Anybody on long-trem prednisone should definitely ask their doctor about this! You will need to double or triple your dose at first, and it may be rough to adust to it, but the results are amazing - at least they were for me. I've been on ADD for 8 years now, and have NO prednisone side effects, and my sarcoid is under control.

Talk to your doc about it - be insistent!

Good luck, and I'd love to hear from others on tnis issue.

Mark