An Overdue Update: FDA Approval, Upcoming Transition, and Adult-Life with HES.
After over 12 years of being a participant in the Mepolizumab clinical trial at the National Institutes of Health, I'm pleased to say that the drug was finally approved by the FDA a few months ago to treat HES. Prior to passing for treatment of HES, Mepo (now, Nucala) was approved at a lower dosage to treat eosinophilic asthma. Now, people like me who get triple the asthma dosage to manage eosinophilic levels can go to a general physician of our choice once a month and get our injections there. Tomorrow I will be visiting my general physician in order to begin the process of getting insurance approval, setting up a schedule for injections, and making the full transition into this new routine.
While it's very exciting to be able to go to a closer doctor's office and no longer have to deal with security, long waits, procedural pit-stops, etc. the end of being an "extended visitor patient" at NIH is bittersweet. I've been going to NIH regularly since I was 10 years old. What began as bi-weekly visits turned in to every three months, then back to every month until today, which was my most recent visit to get my monthly dosage. I've grown up with all the nurses, phlebotomists, doctors, and staff who became my friends and watched me go through all the motions. I still got asked today, "remember when you used to come with mom?" They were there when I made my first solo visit at 18, the countless times I carried books with me to study in the waiting rooms, saw pictures of my graduations, celebrated my acceptance to law school, and so much more with me. While I will still be making my yearly check-up visit there, I will miss seeing all their faces every month and will forever be grateful to them for making me feel so comfortable, safe, and cared for during every visit.
I am so lucky to have had the opportunity to take part in this study because Nucala was a miracle for me. The medication truly made me, what I call "basically normal." With no apparent side-effects and very effective control of my symptoms, the medication let me often times forget that I even had this disease. Besides getting sick more often than other kids and more dramatically due to my suppressed immune system and greater sensitivity, Nucala has been nothing short of amazing for me. I am so glad that it's finally been approved and can be tested out by so many other people who have had no choice but to take prednisone and other high side-effect drugs to manage their symptoms. I can only hope that the medication does wonders for them like it did for me. I encourage everyone who visits this site to read more about the drug and the studies that have been done on it by the NIH and their doctors. They are all available on the site now.
Please continue to share with us your own stories about you or your loved one's battle with HES and if you think Nucala would be an option for you, bring it up to your doctor and read more about the drug on their website: https://www.nucala.com/index.html