My clinical trial started in 2013. An exclusive group of about 250 individuals worldwide, five or six being tested at UC Davis. I had never been in a clinical trial and I doubt if a lot of the readers of this blog have ever been in a clinical trial. I will try to relate what occurred during my clinical trial for the Novartis drug Bimagrumab {BMY338).

The first thing they did was weigh me. At first I was able to stand on the scale for the weighing, but as I got weaker they would weigh me and the wheelchair once they had weighed the wheelchair alone, and put a sticker on the chair as to its weight. The weight was in kilograms. For the next several hours I was accompanied by one of the staff, starting with the drawing of blood. The amount of blood drawn varied over the length of the trial. Sometimes it would be five or six vials and sometimes up to 10 vials. I am not the easiest to get blood out of, the majority of the times it took three or four pokes of the needle to find a vein. At UC Davis, failing to draw blood on two attempts meant someone else would try.

Then came the physical test, consisting of walking in a hallway marked off for the purpose and recording the distance walked in a fixed time; as I remember 6 minutes. During the early visits I was using my cane. As weakness increased, using the Walker became necessary. Staff observing the walking test would become very nervous if it looked like I would fall. Their concern appeared to be the amount of paperwork they would have to fill out whether I injured myself or not. Then it was into another room to test leg and hand strength. Every second or third visit, a dexa scan was done, consisting of laying on my back and x-ray scanning for bone density.

Every visit I would be interviewed about diet and mental well-being. How much and what foods I was eating during the last four weeks. Everything from Soup To Nuts how often and how much. How was I feeling and one question asked every time was “Have you thought about suicide”? All of this was being done in the PMR Building at UC Davis, taking about 2 hours.

Next it was a short drive to the Cypress Building, on thr UCDavis grouhds, for the injection of BMY338. The amount of the test drug was dependent on how much the individual weighed. One of the clinical trial staff would pickup the drug and bring it to the Cypress Building. This was a phase 3 double blind clinical trial, consisting of three different amounts of the drug and a placebo. No one knew who was getting which. The injection of the drug through a PICC line was another series of attempts to find a vein which was the most uncomfortable aspect of the clinical trial. The time spent in the Cypress Building on each visit was about an hour.

As time went on, I felt no change for the better or change in my strength. I would tell the staff they could call me “Placebo Man” as I was sure I was getting the placebo and not the drug. In April 2016 I had my last fusion of the drug trial after a total of 21 visits. It appeared Novartis was was not getting the expected result. Several weeks after the trial I was told I was receiving the placebo and was lucky. Individuals receiving the test drug had some side effects, one of which was diarrhea.

Having been a subject involved in a clinical trial, I can understand where all the small print in the literature that comes with a prescription is generated. Being involved in a clinical trial is not an unpleasant experience and is necessary for development of cures. The staff at UC Davis was doing other trials and were very pleasant to me during the process. Depending on the trial, expenses may be covered; for the one I was in it was $100 per visit. That covered gas for the van and lunch for me and whoever drove the van. Becoming a ‘guinea pig’ may not be your cup of tea but I would do it again if I could.

During the clinical trial I was still visiting the physical therapy doctor at UC Davis on a regular basis.