Last Trip to Nashville

Well, I am sad I’m here. I’m going to Nashville to return unused auto-injectors, their little phone like device to do surveys on, and have a final physical.

In case you haven’t been following, I had an allergic reaction to something a few weeks ago. I had to go to the emergency room and I was removed from the Nexvax trial 4 injections short of completing the trial out of an abundance of caution for my health.

I do feel some vindication in knowing that my event will be reported as a “serious adverse event.” It won’t stop the drug from being approved unless more people have a similar reaction. But I will be a sentence or two in the study results.

Also, it is unlikely that I will find out whether I got gluten in the food challenge or whether I got drug or not. They don’t want to give me that information because I might tell you all. Then that could taint the results because then people in the study read this blog. They know based on my results if they are getting drug and report accordingly.

I do get to pick up all of my test results that they are allowed to give me. They’ve taken a lot of blood work over the last few months, so it should be interesting.

I know many of you have been concerned about how I’m doing. I’m fine. I have a few lingering issues – like continued swelling, but otherwise have returned to all normal activities. My bowels are still pretty normal, but I can start to tell there are some cracks in the system. The predictable afternoon diarrhea is starting to return which is sort of disappointing.

I’ve even thought about using my remaining injectors. I can’t imagine how much trouble I would be in if I took them. But beyond that, I am afraid of another reaction. If I had a reaction and didn’t have permission to take the drug, can you imagine the mess that would cause? So, while I’ve been tempted, I haven’t taken it.

My husband said about going to Nashville – why do you have to go, can’t you just mail them their stuff? I could. But the main reason I’m going is to talk to the doctor. I need some advice on where to go next. Do I go to my Gastroenterologist and potentially start
budesonide, which is where we were before I started the trial? Do I need to talk to an allergist? Should I start with my GP? Also, do I tell doctors I’m now allergic to amoxicillin? Could it have been a delayed reaction to the food challenge? I’m just at a loss here and have had some paralysis by analysis and need a push off the fence.

Another reason to go is Delta charges an arm and a leg to return unused frequent flier miles tickets – $150? Any Delta folks that can help me there would be greatly appreciated. I have one more flight booked and ugh – just insult to injury.

Also, thank you for all of you that reached out privately to offer help and support. I believe I responded to all of the messages, but if I didn’t, thank you. I read all of them and processed them. I have more information than I need and it is causing me some delays in taking the next steps. Sorry.

So, Friday I will have more news about what happened and what my next steps are.

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