Medical Information: Cyclosporine
January 24, 2019
Colin had his appointment with National Institutes of Health (NIH) to review the immune protocol and experimental medication on January 9, 2019. 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" as well as try a Cyclosporine step down.
He was on 12.5 mg of Prednisone and 100 mg of Cyclosporine
First the steroid for two weeks, and then reduce the cyclosporine by only 25 mg off his evening dose.
We were instructed to continue with his Prednisone (steroids) taper, or "step down" as well as try a Cyclosporine step down.
He was on 12.5 mg of Prednisone and 100 mg of Cyclosporine
First the steroid for two weeks, and then reduce the cyclosporine by only 25 mg off his evening dose.
So, in Colin's morning the following day (January 10) 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.
And today, January 24, 2019 I will only give him 25 mg in his evening dose. He will now take 50 mg in the morning and 25 mg in the evening.
Doctors want to do slow tapers, so his body can adjust and learn to regulate on its own.
The reason for choosing to reduce the evening dose vs. the morning dose is that he takes a lot of blood pressure medication as well, and one of the prescriptions is doubled in the morning. So we will match that with cyclosporine. Especially since Cyclosporine is a contributing factor in his high blood pressure. (Drug-induced causes of secondary hypertension)
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
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
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.
And today, January 24, 2019 I will only give him 25 mg in his evening dose. He will now take 50 mg in the morning and 25 mg in the evening.
Doctors want to do slow tapers, so his body can adjust and learn to regulate on its own.
The reason for choosing to reduce the evening dose vs. the morning dose is that he takes a lot of blood pressure medication as well, and one of the prescriptions is doubled in the morning. So we will match that with cyclosporine. Especially since Cyclosporine is a contributing factor in his high blood pressure. (Drug-induced causes of secondary hypertension)
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
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
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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