Medical Information: Prednisone / Steroids
January 9, 2019
Today we are back" home" living in the wounded warrior barracks (Tranquility Hall) at Walter Reed National Military Medical Center in Bethesda, MD
Colin had his appointment with National Institutes of Health (NIH) to review the immune protocol and experimental medication yesterday. A lot of medical information was shared with us concerning his T cells and tregs (Regulatory T cell) as well as his IgG (Immunoglobulin G). Most of the information is too hard for us to understand completely, but we understand that doctors are tracking all of his numbers as well as his HHV-6 (Human herpesvirus 6) reactivation.
We were instructed to continue with his Prednisone (steroids) taper, or "step down"
We were instructed to continue with his Prednisone (steroids) taper, or "step down"
So, in Colin's morning dose today I reduced his Prednisone to 10 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.
He is down to 10 mg of steroids today, and we expect his body to react (as it always does with each taper). His body becomes (even more) weaker and struggles to recover. Sometimes his skin erupts or gets very thick and actually comes off. (It's painful for him and frightening for me).
10 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.
Doctors have been attempting to slowly taper him off this high dose of steroids, but his body doesn't react well to changes in medication.
Here is some information about tapering slowly from Mayo Clinic
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
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
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.
He is down to 10 mg of steroids today, and we expect his body to react (as it always does with each taper). His body becomes (even more) weaker and struggles to recover. Sometimes his skin erupts or gets very thick and actually comes off. (It's painful for him and frightening for me).
10 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.
Doctors have been attempting to slowly taper him off this high dose of steroids, but his body doesn't react well to changes in medication.
Here is some information about tapering slowly from Mayo Clinic
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
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
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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