My Forth Abatacept Open Label Study Treatment

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/5/2008 8:42 PM (GMT -7)   
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.

Take care,
Paul
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
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 3/6/2008 5:23 AM (GMT -7)   
Thanks for the update Paul! Sorry you are not feeling better. Have you considered Humira? Or what is your next step if you stop this treatment?
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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/6/2008 10:24 AM (GMT -7)   
Thanks Tif, Humira is a TNF blocker similar to Remicade. Just before my 7th and last Remicade infusion I was tested for Remicade levels and antibodies. I had no antibodies and the levels were fine. This meant that other TNF blockers probably wouldn’t work for me. The doctor did the test because he wanted to see if I would qualify for a Humira study. Unfortunately I didn’t and that is why I started the Abatacept study instead. Abatacept acts on T cells and is not a TNF blocker. If this study does not work for me then I would look closer at surgery.
Paul
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
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 3/6/2008 12:27 PM (GMT -7)   
I sure hope it works for you Paul! Since you had one good week...that's promising.

I saw the east is getting hit with lots of snow...hopefully it's stopped and is being cleared as to resume normal "life" again in TO.

Spring is around the corner.

Thanks for the update...definitely the most optimistic yet.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/6/2008 7:21 PM (GMT -7)   
Thanks quincy, today wasn’t bad but I still have a long way to go.

Another winter storm is coming to Toronto tomorrow and into Saturday. My snow blower is sure getting a good workout.
Paul
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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