For those that have been following my Abatacept study for UC, I had my third
open label treatment last Wednesday, 4 weeks after my last one. I arrived at the hospital about
12:15pm and had to wait 20 minutes to see the study coordinator. She gave me $20 for this visit but did not require any blood, urine or stool samples. She called the pharmacy to have them prepare the Abatacept. She then called in the study doctor and he did a quick physical examination and asked about
my UC symptoms.
Since my last visit a month ago, things have gotten worse. For the last 2 weeks I have had 10 to 12 urgent bloody BMs per day. I haven’t missed any work because of it but it was very difficult. He then said that at my next visit in another month he would have to decide whether I continue on the
open label or not. If my symptoms do not improve, even a small amount, he will have to take me off the Abatacept.
The doctor then brought up my Alaskan cruise that we talked about
before at an earlier visit. Last time I asked him if he could give me prednisone for the cruise if I didn’t improve by July. At that time he just said we would wait and see. He was in a hurry then. This time he told me he visited Alaska when he was in his early 20’s and had a great time. He said I had to try the Skagway's White Pass Railway and he would help my UC as much as he could. I sure hope he can. The cruise is booked and I’m going no matter how bad my UC is. At least on a cruise there are lots of washrooms and I don’t have to leave the ship if I am feeling bad.
It was now 1:30pm and the study coordinator let me go for lunch and told me to meet her at the infusion centre at 2:00pm. I arrived on time but I had to wait another 30 minutes before the study coordinator showed up. I fell asleep waiting for her. The infusing centre had a new wide screen plasma TV mounted on the wall and digital cable box installed since my last visit. They still had the portable DVD players and a selection of DVD movies. She finally showed up at 2:30pm and hooked up the IV. After taking my vitals, blood pressure and temperature, the treatment started at 2:45 and was over by 3:15. I left the hospital at 3:30pm after my vitals were taken again.
When I got home there was about
6 inches of snow in the driveway and had to shovel it. Luckily I have a snow blower. The day after the infusion I had only 6 BM’s with slightly less urgency than before. Today I only had 3 and the day is almost over. I hope this is the start of an improvement but it is still too early to tell. My next treatment is scheduled for March 6.
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