For those that have been following my clinical trial, yesterday I had my second treatment of Abatacept. The first treatment was 2 weeks ago and I have had little improvement since then with 5 or 6 urgent bloody BMs per day. I arrived at the hospital about
12 noon and the study nurse immediately called the hospital pharmacy to have the Abatacept mixed. I asked the nurse if the pharmacy new if I was receiving the placebo or not. She was reluctant to tell me but then she said she thinks that they do know. In many double blind studies the drug company sends the medicine in containers with patient numbers on them and no one else knows.
I was then given an updated copy of the Study consent form with the changes highlighted to look over. I then signed it and also received a copy. They are paying me $20 for each visit plus the cost of the prep for the scope. On all the other visits she did not have the cash available so I received $100.50 on this visit to cover 4 visits and the prep. I sure won’t get rich but it does cover transportation, parking and lunch. The nurse took my stool sample that I brought from home, daily log of my symptoms, and took a blood sample for the study. I was then told I could go for lunch and return at 1:00 pm.
When I returned the nurse hooked up the IV line to my arm but the Abatacept was not ready yet. She took my temperature, pulse and blood pressure. She then left to go to the pharmacy to pick up the Abatacept. I then fell asleep and when I woke up the Abatacept (or placebo) was hooked up and I was receiving the treatment. I’m not exactly sure when it started. Last time they connected it through a gravity feed drip but this time it was being fed through a pump that is suppose to give better control over flow rate and volume. For some reason the alarm on the pump was going off occasionally. I was trying to sleep and it would wake me up every time. The nurse would have to reposition the IV tubing through the pump to get it to work properly. At one point the nurse said she really doesn’t need the pump and could disconnect it but she didn’t.
Half way through the treatment the study doctor came in and performed a physical examination on me. I asked him if it was okay to get the flu shot. He said it was a good idea and unlike Remicade, there are no restriction on when to receive it. When I was on Remicade I was told not to get the flu shot within 2 weeks before or after an infusion. He then left in a hurry and the nurse, who happens to be the doctor’s wife, told me she just was told the doctor is off to the airport to catch a flight to Montreal for a meeting and he would be back later that night. She said this happen all the time and it is part of being a doctor’s wife.
The infusion took about
1 ½ hours and I had to wait for 1 hour after for observation before I could leave. I finally left the hospital at 4:00 pm. The study nurse called me today at work to check up on me to see if I had any side effects from the treatment. I have had no side effect to this treatment. My next treatment is scheduled in 2 weeks.
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision