My second Abatacept treatment

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 10/2/2007 7:34 PM (GMT -7)   
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.

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
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29842
   Posted 10/2/2007 9:04 PM (GMT -7)   
Paul...do YOU think you're getting the real thing? It seems something positive is happening since your bms have definitely decreased. I didn't realise it was a double-blind study.

How many infusions will you be getting altogether (I forget)?

Thanks for the update....always appreciated.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 10/3/2007 6:53 AM (GMT -7)   
Quincy, I really don’t know if I have the real thing. I don’t think I had a reduction in BMs since starting the study. about 1 ½ months ago I had a reduction from about 8 or 9 to my current 5 or 6 after I was treated for C. difficile.

I am currently in the Induction Period which consists of 4 treatments at day 1 (first treatment), 15, 29, and 57. I have a 29% (2 out of 7) chance of receiving a placebo. If I respond positively to the Induction Period I will then enter the Maintenance Period which last about one year. I would receive treatments on days 1 (first treatment day of the Maintenance Period), 29, 57, 85, 113, 141, 169, 197, 225, 253, 281, 309, and 337. During this time I have a 50% chance of receiving the placebo. If I don’t respond after the Induction Period I can enter the open-Label Period where I will receive the real medication.
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 10/3/2007 8:54 AM (GMT -7)   
Hey Paul! Thanks for the update. I hate you are suffering but I do enjoy reading your posts.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 464
   Posted 10/3/2007 11:57 AM (GMT -7)   

Hi Paul

Its interesting to see how you are getting on in the abatacept trial as I myself am hoping to enter the exact same trial.  I still have to get all the pre-screening tests done first (TB, Hepatitis, etc).  In the trial documentation that my GI emailed to me, it says that if your UC does not improve after the initial 3 months - you can ask to be guaranteed to receive the real medication and not the placebo.  You dont have to wait the full 12 months.

Hope you do getter better though. I am pinning my hopes on this working, I have exhausted all other medical options now to get into remission....


Back on Pred - 8mg - Steroid Dependent :-(
Azathioprine 150mg
Actonel 35mg
Predfoam Enema
VSL #3 with Activia Yoghurt
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
Prograf Tacrolimus 4mg
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 10/3/2007 7:12 PM (GMT -7)   
Thanks Tabatha and KSU.

KSU, I hope you qualify for the study. Actually I mentioned in my last post above that If the Induction period doesn’t help I will be able to go right to the open label (real medication).
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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