Prednisone Step Down
Medical Information: Prednisone / Steroids
November 9, 2018
Today we are still living at Walter Reed National Military Medical Center (WRNMMC) and Colin is still under the medical care and immune protocol at National Institutes of Health (NIH).
The doctors have instructed me to "step down" Colin's Prednisone (steroids) today.
At the onset of his illness Colin was initially taking 125 mg of steroids! That is a very high amount of steroids. He began taking this high dose back in April 2017.
He is down to 15 mg of steroids today, and believe me as I write this - we are so worried. Each time we taper his steroids - he flares. 15 mg may not sound like much medication, but he has been dependent on it for so long that it's extremely difficult for his body to make up the difference and recover when it's reduced.
Here is some information about tapering slowly from Mayo Clinic
Doctors have been attempting to slowly taper him off this high dose of steroids, but his body doesn't react well to medical changes.
This past year doctors have been tapering him off many of his immune suppressants in an attempt to replace them all with the experimental dose and use of XELJANZ XR (tofacitinib).
Medical Information: https://www.xeljanz.com
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