For those that have been following my Abatacept study for UC, I had my fourth
open label treatment today, 4 weeks after my last one. I arrived at the hospital about
1:00 pm, a half hour late because of a mild snow storm and a stalled train at the subway station. I’m sick and tired of all the snow. This winter we are having more than normal amounts of snow here in Toronto. The study coordinator was waiting for me and she immediately gave me $20 for this visit and took some blood and urine samples. I gave her my symptom log. At this visit we are to decide if I continue with the
open label or stop the study. A few weeks ago the study coordinator e-mailed me and asked if I had a preference to continue or not. At that time I had just finished one of my best weeks in a few years with 3 or 4 BMs per day and only mild urgency with little blood. I thought the Abatacept was starting to work so I told her I defiantly wanted to continue. Since then things got a lot worse with 8 to 10 extremely urgent bloody BMs per day.
The study coodinator then called the pharmacy to have them prepare the Abatacept and told me to meet her at the infusion room at 2:00 pm. She then called in the study doctor and he did a quick physical examination and asked about
my UC symptoms. He already new from the study coordinator that I had one good week. He thinks that if my symptoms don’t improve again for at least a week or more he will recommend I stop the study at my next appointment in 4 weeks. There is one other study patient on this study at this hospital and he started the study the same day as me. We both have had the infusions together at the same time and we both started the
open label part of the study at the same time. I found out that he dropped out of the study today because he has had no improvement. I then left and had lunch.
I arrived at the infusion room at 2:00 pm but the study coordinator didn’t arrived until 2:30. She took my vitals (blood pressure, temperature and pulse rate) and connected the IV line. She started the infusion at about
2:45 pm. It took about
a half hour and I left the hospital at about
3:30 pm after my vitals were taken again. I have never experience any side effects from the Abatacept. The study coordinator did not set a date for my next appointment yet. She said she would e-mail me in a few weeks to see how I am doing and decide at that time if I will continue with the study or not. I sure hope it works.
When I got home the snow was already cleared from my driveway. I have a snow blower and usually clear my next door neighbor’s driveway as well as my own. This time my neighbor had his brother-in-law clear his driveway with a snow plow blade on his pickup truck and he asked him to do mine as well. I was nice and I only had to clear the edges, porch and sidewalk.
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
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