It is a wrap!

Last updated: June 2016

In just a day, I will have completed my third investigational drug study (clinical trial) and my fourth total study. Some may say that I am a research junkie. I certainly have a thirst for knowledge and I have learned that participating is better, than sitting on the sidelines waiting for it to happen. If you have ever been promised the miracle of a new drug that is suppose to be on the market sometime soon…or something in development. You know that this can essentially take, what feels like a lifetime to happen. The reality is that not every drug will be perfect. As medicine becomes more driven by personalized medicine approaches. We are closing the gap on one-size fits all promises. This particular trial that I am in, was specifically designed for patients like me, eosinophilicasthma that is prednisone dependent. The hope was that it would provide some benefits. There are no guarantees in clinical trials, what works for one participant, may not work for another. It is something that you really have to wrap your head around. It was a very challenging concept during my first trial. I wanted so much for everything to work , and work instantly. It simply does not work that way. It   always feels bitter sweet at the end. Especially, when you are getting an investigational drug that you think may be working… In this circumstance a newly approved biologic, an anti IL-5. This study does not have an extension study, it will be the end of the road for receiving anymore of the study drug until it is fully on the market. Since I am not a doctor, I am not 100% sure of its effectiveness for me, however, I will take a lower maintenance dose of prednisone and being symptom free more often, any day.

This study is fairly short in duration at eight months, providing six infusions total, two placebo and four study drug. It always feels like such a roller coaster. Both the Principal Investigator and I are blinded to what I got at each visit. I can’t wait to find out, what I got .It takes upwards of a year before I will know. The study will need to be completed before any of this will be revealed.

I will miss my connection to the research center. It is intimate, welcoming and the research team made up of doctors, research associates, and RT. Everyone is super smart, amazingly caring and engaging. You are treated like you have a clue, but they won’t hesitate to raise an eyebrow if you are being a poor perceiver or have wild theories. It is also a great place to learn about what is new in research and also if theories are being debunked. I am a firm believer that you have to be an informed patient, to be an effective advocate for yourself, and also to be less confused in some discussions with your doctors. If they ever illustrate something for you, keep the drawing! This is how I developed a better understanding of cytokines.

I am grateful to have had the opportunity to be in a study and while I have some concerns for what my future will bring. I am not looking forward to what will be the inevitable increase in my prednisone dosage or the return of symptoms, but I feel much more in control of my future. I know what has worked in the past, what I am hoping will come to market and I am better able to understand the risks, expectations and responsibilities of being in a study.

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