Sorry I didn’t update you guys earlier, I had some family issues come up this weekend. But I’m back – so watch out!!!
Thursday I went to Nashville to wrap up my part of the study. I returned my unused auto-injectors, used auto-injectors, logs, and little computer they gave me to do study surveys. I had a EKG, received any blood test results they could give me, talked to the doctor, shook hands, and was set free into the world.
My blood work results are interesting. Here it is. I am heterozygous (one copy) of DQ2.5, but we knew that based on the arm of the study I was in. Also, they did look for the DQA 1 and DQB1 alleles but I can’t tell if they are positive or not based on the results. The “Reference Range” says “No Reference Range”, so I don’t know what that means. I can’t tell if I have those alleles or not.
My Celiac blood panel is well within normal ranges. On November 1 during my screening appointment, my DGP-IgG was 3 where 20 or more is positive and my TTG-IgA was 1 and 4 or more is positive. On December 17, my DGP-IgG was 2 and my TTG-IgA was 2 which was the day of first dose. On January 22, which was at the completion of updosing and first maintenance dose, my DG-IgG was 3 and my TTG-IgA was 1. February 28, which is the last test I had and half way through maintenance dosing, DGP-IgG was 2 and my TTG-IgA was 2. So, my Celiac blood work did not change much during the course of the study. December 13 was right before my dosing started. That is good – either I got the medicine and it worked or I didn’t get the medicine but kept up with my GF diet.
We also talked about my allergic reaction and follow up with my local Gastroenterologist. I’m going to wait about 6 months before returning to my Gastro for any follow up. Honestly, I’m doing quite well compared to before I was in this trial. I’m not as tired, my bowel movements though loose aren’t urgent or consistent or daily or yellow anymore, which is a major change for me.
I’m going to let the allergic reaction slide a bit too. I’m not sure what caused it and chasing it down will be a huge pain and a rabbit hole I’m not sure is worth pursuing. I will, however, have a long talk with the prescribing doctor before taking another dose of amoxicillin. So, I think I’ve got a plan for that too.
I had 4 doses remaining at the maintenance level before completing the trial. I am trying to put a positive spin on this so here goes. I am trying to think of this like taking an antibiotic. You feel better after 2 days of antibiotics, but still have to take all 7 days of the antibiotic to make sure it really killed all the bad germs. I’m thinking of this the same way. I got 16 out of 20 maintenance doses of the drug. It’s like I took 5 and a half days of antibiotics rather than all 7 days and I still feel fine. Or maybe I’m just trying to make myself feel better, but let’s just let me live in that reality for a while.
On the whole, I’m much better now than before I did this trial. I’m healthier and my body seems to be working better. I still get fatigued, but it isn’t like it was before the trial. My bowels are working better and aren’t causing major disruptions in my life anymore. I can’t explain it, just my body is working better.
I’m glad I did it. It was hard on my family and hard on me. I hope I helped move science forward in the search for a cure. I know there are 149 people that have completed or are still on this Nexvax path and I am here to help or offer support if you need it. Feel free to PM me if you need me.