Hey everybody, I’m on the mend from the weekend. I laid low, got a lot of rest, and the swelling in my hands is almost gone. No green gluten free beer for me on St. Patrick’s day. 😦
I am currently working with the doctors and medical staff to determine what our next steps are for my part in the trial. When I say, I’m working with them that means, they are talking about the situation and will let me know what to do. Then I will follow their instructions. That is us working together. 🙂
I do not know if I am getting the drug. Both doctors and Nurse Ratchet at my test location don’t know either. Nobody knows. Well, somebody knows they are just higher on the food chain than I know. So, it is hard to decide if this is a side effect or something completely different. There are a ton of variables and we just don’t know at this point. But some very smart people are working on it to try to figure out what happened.
The doctors and Nurse Ratchet have been very good with helping me. They have followed up more than I expected and really been concerned about my well-being. They have said that my health and well being come before any study outcome. Words like that are reassuring. I’ve got a great team supporting me and I know I’m in good hands.
I knew going into this study there was a risk of something going wrong. I wasn’t sure what would happen or if anything would happen, but I was well informed of the risk. I also knew that Nexvax works differently than any other medicine on the market today. It is targeting the root cause of the reaction rather than simply masking the symptoms. So, we are truly on the cutting edge here.
I’m also one of the early people in the study. I’m 4 shots from the end of maintenance dosing. I’m about six weeks behind the very first person injected in this phase of the trial. I’ve been at this for close to 14 weeks with bi-weekly injections. My Celiac symptoms have improved dramatically over the course of these 14 weeks. I have more energy, better bowel movements, and believe I am healthier overall because I’ve participated in this trial. There are lots of positives to take away from these 14 weeks no matter what ends up happening.
I’m willing to push forward and continue the study protocol. I’m not convinced that this reaction has anything to do with Nexvax. It was too long after the food challenge, that we don’t even know if it was gluten or not, This reaction could be something completely unrelated.
There will be bumps in the road on journey to a cure and I hit the first bump on Friday. But that doesn’t mean we give up there. We get better and keep moving forward. Quitting when there is a bump is not going to get us what we want – a cure. So, we keep putting one foot in front of the other and keep marching forward.
I’m not sure what the next few days will have in store. I know that I have to do my part to continue to recover and get stronger for whatever comes next. That is my part in the study. Decisions about what happens next are beyond my control. My job is to be the healthiest, most enthusiastic trial participant they have. Everything else will take care of itself.
My bottom line is that I’m still glad I signed on and I hope I get to finish.