As some of you know, I have a rare and chronic illness called Hyper Eosinophilic Syndrome.
Eosinophils are a specific type of white blood cell that typically target allergens or parasitic invaders in the body. Sometimes your body starts to produce antibodies against itself and begin to target your own body. This is what happened to me.
You might never know by looking at me that I am afflicted by this illness.
I am the kind of person who would not take Advil if they had a headache and would just try to drink more water. I had tried fasting and altering my diet despite 0 response to allergens in allergy testing and nothing holistically had worked for me so far. It turns out that my bone marrow is just producing too many of these blood cells. For years, I used to walk around with peppermint oil to put by my nose to alleviate my chronic sinus issues(a foreshadow then to my full blown illness) so it’s funny that I say this now…
If not for western medicine, I don’t know what I would do.
This illness has been at times debilitating for me. Manifestations of inflammation and damage to my body caused by the toxicity released by eosinophils lead to extreme fatigue and excruciating pain in my entire body. My sinus becomes so inflamed that I can not breathe, my eyes are so itchy that it's tough to keep them open, my GI tract becomes incredibly inflamed and my belly may fill up with eosinophilic ascities, my lungs fill up with eosinophils, I feel so tired and weak, eosinophils are even in my skin. If I do not keep my eosinophil count down, my body can become so inflamed that my organs can begin to shut down. This has happened to me in the past, leading to hospital visits.
I have been corticosteroid dependent for over a year now.
I have been having more good days than bad.
I have been focusing on the present more than the future and the past.
I feel so fortunate for every good day that I have and I truly cherish those moments.
Corticosteroids like prednisone are sometimes taken to suppress your immune system. They are not the best for you in the long term as they have a plethora of bad side effects but you have to see the worth by weighing the good and the bad. Despite the bad side effects that I have seen from them, they have kept my pain minimal and they have been keeping me alive.
I am currently the director of a learning center by day and I work with children. It’s a lot of work but I also find it healing to teach and to help children.
I have to be careful when the kids come in sniffling because the medicines that suppress my immune system make me more susceptible to illness. Most recently, I got sick from one of the kids and had to be hospitalized for 3 days because I am immunosuppressed.
If I am having a bad day, I try not to wear how I feel across my face. I wake up every morning and work my full time job. Sometimes, specifically if my medication doses are low, I am so fatigued and in so much pain that I have to peel myself out of bed to do this. I don’t mind because I would rather be working and keeping physically busy because my mind is also busy and not thinking about my illness. I often have to taper my dose of prednisone not only to minimize the negative side effects but also so that my body does not get used to the dose that I am on and need more and more before one day it isn’t responding at all to the medicine.
Since my diagnosis over a year ago, I have been researching different alternatives to corticosteroids. I stumbled across mepolizumab. Mepolizumab is a humanized monoclonal antibody that targets interleukin 5 which regulates the production of eosinophils.
I have been wanting to try this medicine ever since I have been reading about clinical trials in which people with eosinophilia related illnesses who were administered this biologic therapy via intravenous infusion had their eosinophil level drop to 0! They were able to get off of corticosteroids completely.
Why suppress the entire immune system when you only need to suppress one thing?
This is the thing that I need to try, right?
The only problem? The FDA hadn’t approved it yet.
One year later and Mepolizumab finally has FDA approval. It’s being released under the name of Nucala in a 100mg dose administered as a subcutaneous injection for an exuberant amount of money that makes me extremely grateful for health insurance. It has only been released to treat eosinophilic asthma. It’s a much smaller dose than used in clinical trials for Hyper Eosinophilic Syndrome but I’m hopeful that it works at this dose for me.
I received my first Nucala injection last night. Well, here goes nothing.
