For those that have been following my Abatacept study for UC, I had my second
open label treatment yesterday, 4 weeks after my first. I arrived at the hospital about
1:00pm and immediately saw the study coordinator. She gave me $20 for this visit but did not require any blood, urine or stool samples like previous visits. She called the pharmacy to have them prepare the Abatacept. I had no improvement in my symptoms. I have had 7 or 8 urgent BMs per day with blood on most of them.
I waited another 15 minutes to see the study doctor. He performed a physical checkup and answered a few questions. The first 3 treatments of the
open label study were 2 weeks apart then 4 weeks after that. I had a total of 4 treatments in the placebo controlled study before entering the
open label study. I asked him why I didn’t have the first 3 treatments of the
open label 2 weeks apart and he said that since we don’t know if I was on the placebo or not they won’t give me them 2 weeks apart because I could be overdosed if I had the real thing and not the placebo.
If the treatment works for me he normaly expects improvements in 3 to 4 treatments. That is why the placebo part of the study had 4 treatments. Now that I’m on the
open label it may take longer if I had the placebo because I didn’t have the loading doses at 2 weeks apart. The doctor feels it could take 4 or 5 treatments to see an improvement. If I actually had the real treatment and not the placebo then there is a good chance the medication will not work for me. I will just have to wait and see.
I then had lunch and met the study coordinator at the infusion centre at 2:00pm. After taking my vitals (temperature, blood pressure and heart rate) she connected the IV line and started the infusion at 2:15pm. The infusion lasted a half hour and I left the hospital after my vitals were taken again at about
3:00pm. My next treatment is scheduled for February 6.
Thanks for listening,
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