October 7,2019
My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.
Today's Update:
Colin had an appointment with National Institutes of Health (NIH) to review the immune protocol and the results so far of this experimental medication that he is taking.
He has had testing twice on his adrenal function to see if it is safe to take him completely off Prednisone and switch to Hydrocortisone.
At that time, he was not yet ready.
So at a later visit (August 6, 2019) he took the test again.
He "barely" showed within range (at the very bottom line).
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 pray for God to watch over Colin and to heal him.
Colin had an appointment with National Institutes of Health (NIH) to review the immune protocol and the results so far of this experimental medication that he is taking.
He has had testing twice on his adrenal function to see if it is safe to take him completely off Prednisone and switch to Hydrocortisone.
At that time, he was not yet ready.
So at a later visit (August 6, 2019) he took the test again.
He "barely" showed within range (at the very bottom line).
We were instructed to continue with his Prednisone (steroids) and then switch over to Hydrocortisone when he has plenty of down time to rest and work through it.
He is a also a patient at our local VA (Lake Nona). However, he is being followed closely by NIH.
He is a also a patient at our local VA (Lake Nona). However, he is being followed closely by NIH.
Today he is on: (Listing immune suppression medicine only)
ZERO mg of Prednisone!!
25 mg of Hydrocortisone
10 mg of Tofacitinib
No more Prenisone!
Predisone has caused so many problems for my husband.
He has Cushings
He has Glaucoma & Cataracts - Steroid-induced posterior subcapsular cataracts (PSCs) https://www.ncbi.nlm.nih.gov/pubmed/17900234
(He had the surgery, they also placed a stint into each eye)
We don't know how he will react with this change in medicine.
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.
Colin currently has many red spots all over his back and legs. He is completely exhausted, constant head aches and lots of pain in his joints all over.
I made the mistake of bringing him along with me to a business networking event last Tuesday. That totally wiped him out for the rest of the week. He barely got out of bed.
He was able to attend one of my doctor appointments with me, which was very comforting.
On Saturday he was able to walk, just a little, through a community event. We only stayed for about thirty minutes though.
He has not gotten out of bed now from the pain and exhaustion.
My heart goes out to him, every day and forever. This situation has been really hard on me as well. Hard on my body - I have a lot of doctors and procedures and care now that we have left Walter Reed. I miss my husband. Colin has no energy, he has no strength. We don't get to do many things together expect attend doctor appointments.
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