Prednisone Step Down
Medical Information: Prednisone / Steroids
February 13, 2019
Colin had his appointment with National Institutes of Health (NIH) to review the immune protocol and experimental medication that we hope will replace all other immune suppression medicine today, February 13, 2019.
We were instructed to continue with his Prednisone (steroids) taper, or "step down" and his doctors put a plan together that would cover the next few tapers.
Today he is on: (Listing immune suppression medicine only)
10 mg of Prednisone
75 mg of Cyclosporine
1000 mg of Cellcept
10 mg of Tofacitinib
First the steroid will be reduced (February 14) and then we will reduce the cellcept by 500 mg off his morning dose (February 28) and then hopefully is everything is going well and he is able to continue tapering on schedule we plan to reduce the steroids down to 8 mg (March 14)
So, in tomorrow's medication I will reduced his Prednisone to 9 mg. At the onset of his illness Colin was initially taking 125 mg of steroids! That is a very high (dangerously high) amount of steroids. He began taking this high dose back in April 2017. Unfortunately, he has suffered damage to his eyes from long term steroid use. He has a lot of eye pain and pressure. I give him a lot eye drops. We also learned that he not only has glaucoma, but also has to have cataract surgery. This explains why he is having a hard time seeing, blocked vision, headaches, pain and burning in his eyes and also seeing starbursts.
Doctors have been attempting to slowly taper him off this high dose of steroids, cellcept and also Cyclosporine to replace with his experimental drug: XELJANZ XR (tofacitinib)
Here is some information about tapering slowly from Mayo Clinic
Medical Information: https://www.xeljanz.com
My husband has a very unusual, prolonged undiagnosed medical condition that is chronic. They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.
There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.
So this entire process has been scary, stressful, confusing and challenging. Which is why we continue to prayer for God to watch over Colin and to heal him.
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