Re: Entocort -- Steroid Warning Network

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Date Posted: 22:39:59 03/30/07 Fri
Author: Cyndy
Subject: Re: Entocort
In reply to: Ivy 's message, "Re: Entocort" on 11:57:44 03/20/07 Tue

To all the Entocort users: I hope you all have better health luck than I have had. Got collagenous colitis almost 11 years ago. After the first three years I started using prednisone, about three treatments per year for 2 years. Then I was put on Entocort with the same dosing schedule,(3/2/1 for 8 weeks) and more than 3 times a year. I thought it was great at first. That was about 4 years ago. Now I only take 1 a day for 3 to 5 days at a time, and then lay off for a week to 3 weeks, whenever the colitis starts up again. The reason is because it has messed me up in so many ways that it is scary. I have muscle weakness, muscle cramps, osteoarthritis, cervical degenerative joint disease, sores all over my arms and trunk that won't heal, light and sound phosphenes and bouts of vertigo, and blood spots that come up on my arms each time I take the entocort for more than 5 days at a time. My doctor says that "he can't tell me if the entocort is doing this to me because he doesn't have data on that, he only has data on how entocort is suppose to work." But I know that each time I use it for more than a week, all the problems I have get worse, and then they begin to lighten up a little when I can stay off it long enough. Anyone else have problems from this med? Cyndy

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