NIAID - National Institutes of Allergy Infectious Disease

The NIAID - National Institutes of Allergy Infectious Disease is the institute that has been helping my husband (Colin Benson) with DRESS Syndrome.  We are so blessed to have a strong team of dedicated health professionals in his life and caring for him.

In May of 2018 the NIAID (after much research and analysis of Colin's specific condition) offered to take Colin into their full time care and hospitalize him with a trial drug, Tofacitinib.  They were also going to try anti-viral therapy for his HHV-6 reactivation.

Tofacitinib is also known as xeljanz. https://www.xeljanz.com/  Xeljanz is primarily used for Rheumatoid Arthritis.  It is a strong and powerful drug, one that comes with a black box warning label.

Our family was made aware of this drug around the time he was hospitalized at Walter Reed Medical Military Center (WRNMMC) in December 2017.  The medical team at WRNMMC had tried various other drugs and these medicines just weren't strong enough or able to hold back his break through skin eruptions, rashes and his relapses.  Not only was his skin shedding in great volume, but his labs were showing more damage to his kidneys and liver. Additionally labs showed reactivation of the HHV-6 Virus.  It was clear that there was a lot more going on than just DRESS Syndrome.  DRESS Syndrome should go away after removing the offending drug and after several weeks of mediciations.  Unfortunately, Colin complex condition was much more severe and longer lasting.

Because his condition was so unique and the medicine that NIH was interested in using was so powerful, we took Colin to Mayo Clinic for a second opinion.  A new set of brilliant doctors were looking over his entire body, labs and medical history only to concur that his case was unique.  His doctors were all in uncharted waters and no medical treatment plan existed for his condition, nor was there a diagnosis that really explained everything happening with him.  Even still, every doctor was still trying to determine just exactly what was his medical condition.  Since DRESS Syndrome is a diagnosis of exclusion all of doctors could only do one thing, keep testing.

Some of the suggestions provided by doctors at Mayo Clinic were to continue with IVIG (Intravenous Immunoglobulin Treatment).  He previously used IVIG three days in a row while hospitalized at the Burn Unit in Washington Hospital Center, Washington DC. Additionally, Mayo Clinic doctors were able to determine that Colin's CYP2D6 Gene metabolized drugs slowly in his liver.

After visiting the Mayo Clinic in Minnesota twice, it was now April 2018 and we were ready to move forward with Tofacitinib and the Anti-Viral with NIH in Bethesda, MD.  The process took a few weeks and he was moved into their hospital for observation in May of 2018.

He stayed in-patient at the NIH (NIAID) for over 6+ weeks.  (Thankfully it was across the street from WRNMMC, so I was able to see him every day.  I was also permitted to spend the night with him several times.)

Colin's Condition - March 15, 2020

Corticosteroid Step Down

Medical Information:  Hydrocortisone/ Steroids 

March 15, 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.  He began this schedule on January 26, 2020; however we traveled a little (to meet our grandchild) so he was too exhausted to start the next taper.  We moved it back two weeks.

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

15 mg of Hydrocortisone 10 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.  

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.  

Colin's Condition - October 7, 2019

October 7,2019

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 pray for God to watch over Colin and to heal him.

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).

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.  

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.

Colin's Condition - February 13, 2019

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

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.  

Colin's Condition - January 24, 2019

Immune Suppression Step Down

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.

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.  

Colin's Condition - January 10, 2019

Prednisone Step Down

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" 

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.