Colin's Condition - January 26, 2020

Corticosteroid Step Down

Medical Information:  Hydrocortisone/ Steroids 

January 26, 2020

We were instructed by the endocrinology department at the Lake Nona VA to continue with Colin's Steroid Taper.  

We were instructed to continue with his Cortisone (steroids) taper, or "step down" and his doctors put a plan together that would cover the next few tapers.  We would be stepping him down four weeks at a time.
Today he will taper to 15 mg in the morning and then 5 mg in the evening for four weeks.

Today he is on: (Listing immune suppression medicine only)

20 mg of Hydrocortisone 15 mg in the morning and 5 mg in the evening.

It is good that he is off Prednisone, but his body is still not completely clear of his rash and itchiness.   

Currently his abdomen and legs down to his feet are covered in red skin rashes and bumps.

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

https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Medical Information: https://www.mayoclinic.org/drugs-supplements/hydrocortisone-oral-route/side-effects/drg-20075259

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.