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.)
