My Mepolizumab via Subcutaneous Injection…an NIH First!
I am excited to share some big news about my Mepolizumab treatment. I recently became the first NIH patient to receive this drug through subcutaneous injection rather than an intravenous drip. So far, so good!
First, some background on my condition and treatment. I’ve been receiving treatment for my hypereosinophilic syndrome, or “HES,” at the National Institutes of Health for nearly ten years. My doctor, Amy Klion, has managed my care since I was 11 years old and I am extremely grateful for her.
When I turned 12, I became eligible to receive treatment with Mepolizumab, or “Mepo,” under a compassionate use protocol. Compassionate use refers to treatment for a seriously ill patient using a new, unapproved drug when no other treatments are available. Using Mepolizumab meant I was able to discontinue treatment with prednisone, an oral steroid, except for the occasional asthma flare up. Mepolizumab has worked incredibly well for me. I was the only pediatric case at NIH prior to Jada Mahoney’s diagnosis (Jada is a co-founder of this blog), and I was also the only pediatric patient to be placed on the trial for Mepolizumab.
The hope is to have Mepolizumab approved by the FDA for severe asthma treatment. Since many HES patients also suffer from asthma, this could open the door to a new treatment option for many HES patients.
The enrollment information for the active NIH/GlaxoSmithKline clinical trial for Mepolizumab use can be found clinicaltrials.gov. This trial has been running since 2005, and continues to recruit new participants. Anyone meeting the criteria is welcomed to apply for the study. Two research papers have been published from the prelimary results of this clinical trial, one in 2008 and another in 2013.
Over the past few years, my schedule has remained the same. I visit NIH every eight weeks, get blood drawn, see Dr. Klion and nurse JeanAnne Ware in the clinic for an overview, head over to the day-hospital, sit for my 30 minute IV injection of Mepo, get re-examined after, then go home. Very easy!
Whenever it was time for my infusion, I could feel it. My asthma and sinus issues would start to slowly reappear. To combat these emergences of symptoms, we’ve had to shorten my buffer time between infusions over the years – from every twelve weeks, to every ten weeks, and now every eight weeks.
So here’s the latest news. A month ago, I visited NIH for my regular infusion and was told that Mepolizumab was now being offered through subcutaneous injection, meaning instead of receiving the drug via an IV drip, I would receive three shots. I was asked if I wanted to be the first person to test it out! Of course I was a bit anxious but the thought of being the first person excited me so I said “Yes.”
The only catch was that the dosage would be less than that of an IV, so I would have to visit NIH every four weeks as opposed to every eight weeks. That wasn’t a problem for me
because I am so very lucky to live only 20 minutes away from NIH.
Later that day, I visited the day-hospital and received the three injections. While I sat around for an hour as they exa
mined me to make sure there were no weird reactions, I got to meet a woman from California who, I learned, was also on the Mepolizumab study and was receiving the subcutaneous version that day too. Since I think I still got my shots before her, I will keep bragging about being first!
This past Friday was my second time receiving the subcutaneous version and it went really smoothly. This appointment was also my six-month check up at NIH, which I documented with some photos that I am sharing on this blog post.
During this visit, the NIH took 15 vials of blood – 8 vials for research and 7 vials for clinic use. They also performed a Pulmonary Function Test, an EKG, and an Echocardiogram on me.
I am hopeful that this new subcutaneous injection form of Mepolizumab brings us a step closer to full FDA approval for HES, and a step closer to treating everybody suffering from HES.
There’s so much more I can say on my experiences on Mepolizumab and I would love to answer any questions that anybody has for me. It’s a bit difficult to fit it all in a single blog post so I invite you to email me at firstname.lastname@example.org if you’d like to talk to talk to me more about how my treatment has gone.