I am officially off the Abatacept study

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/3/2008 8:55 PM (GMT -6)   
Today I had a flexible sigmoidoscopy as part of my Abatacept study for UC. I have been in the study for the last 6 ½ months with 3 sigmoidoscopies, 4 possible placebo treatments and 4 open label (the real medication) treatments with no improvement in my symptoms. Today was to determine if my inflammation and symptoms have improved enough to keep me in the study.

Yesterday I took the prep, 2 glasses of Pico Salax 6 hours apart, and it cleaned me out well. I arrived at the hospital to see the study coordinator at 10:00am this morning and gave her a blood and urine sample along with a symptom log for the last week. She gave me $20 for the visit and $20 for the cost of the prep. I also had to complete 4 different questionnaires about my symptoms and condition. Each one had 20 to 30 questions ranging from my fatigue and energy levels to my sex life for the last 2 to 4 weeks. It was the same questionnaire I completed twice before during this study.

The study doctor then came in and performed a physical examination on me. We briefly talked about my symptoms since my last Abatacept treatment 4 weeks ago. I had between 5 and 12 urgent bloody BMs per day with an average of about 8. I plotted the numbers on a graph and the doctor said it looked like the stock market. He didn’t want to talk about my options until the sigmoidoscopy.

I then went to admitting and then to the Endoscopy Centre for the 3rd time in 6 ½ months. The orderly there recognized me and even knew my name. His name happens to be Paul as well. I told him I liked it so much (NOT) that I came back. I don’t think it is good when they start to recognize me and know my name. The nurse offered to hook up an IV line for sedation but I refused because it is only a sigmoidoscopy. They didn’t give me a hard time about it like last time because they knew that is how I did it before. It’s becoming almost automatic now.

They wheeled me into the procedure room at 12:30 pm and the study doctor was waiting for me. I asked if he was planning to take biopsies and he said it wasn’t required at this point in the study. He then started the scope and said it looked worse than the last 2 times. I saw several small bumps in my colon and asked the doctor what they were. He said they were early formations of polyps. I saw 5 or 6 grouped close together. I don’t remember seeing them before. The doctor took several biopsies of them. He didn’t seem too worried about them but it will take a week or more to get the results of the biopsies.

They wheeled me back to the recovery room and the doctor came with me to discuss my options. As a result of the scope I am now officially off the study. He recommended that I could go on one of 2 studies he will be starting in a few months or consider surgery. I’m not really interested in another study as I have already tried 2 with no results. He also said I could try a round of prednisone but didn’t think I should if I go for surgery. He told me to think about it and get back to him or his secretary. He wants to see me in 8 weeks as a follow up and said if I want to talk with a surgeon contact his secretary to make an appointment with one of the 3 surgeons available at the hospital. The doctor said talking to a surgeon will not commit me to anything. It is only to get more information about the possibilities.

After the scope I went to the secretary’s office and it was locked so I went for lunch. After lunch I went back and she still wasn’t there. Another girl there suggested I call her to make the appointments so I went home. It was a long day but now I have to seriously think things over. Maybe it is good that I didn’t make an appointment right away to see a surgeon. This will give me time to research the surgeons to see which one I would prefer.

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
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/3/2008 9:33 PM (GMT -6)   
Paul, I'm so sorry this didn't work out for you. I certainly understand why you'd feel that way about entering more studies, when there's absolutely no guarantee of any improvement at all. I'm sure whatever decision you make will be the right one for you.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/4/2008 8:29 AM (GMT -6)   
Will be thinking of you!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5177
   Posted 4/4/2008 9:48 AM (GMT -6)   
You really have been a trooper, Paul, going thru this study. It will likely work better for you to have time to research doctors & rest up a bit before committing to a new round of appointments. Probably that secretary inadvertantly did you a favor by not being around ... (annoying as that kind of scene can be when a patient is already tired out from exam, etc.)! All good wishes being sent your way. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/4/2008 11:07 AM (GMT -6)   
that's too bad Paul- I know you were really pinning your hopes on this one. I too was 100% against talking with any surgeon, but when I finally did, I felt better. It's true- knowledge is power. My GI kept saying the same thing to me, about meeting with a surgeon- "This doesn't mean you have to commit to anything, it's just to get more info & look at your options." Of course THAT didn't ring true to me! But really, after talking with the surgeon, I came to the conclusion that "Hey, I could do this surgery!". And here I am, awaiting my surgery date & feeling ok about it. Anyway- take care. I hope things go well for you, & I know you will make the right decision when it's time.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/4/2008 8:13 PM (GMT -6)   
Thanks everyone, I have never wanted to seriously consider surgery before but now I am ready. My GI is located at Mount Sinai Hospital in Toronto. They have a very good IBD department that includes gastroenterology, colorectal surgery, psychiatry, pharmacy, dietary, physiotherapy, occupational therapy, enterostomal therapy, nursing and social work. There website is at:
 
 
I was looking through their site to get information about surgery and their surgeons when I found the following videos:
 
An Introduction to the Pelvic Pouch Procedure
http://www.mtsinai.on.ca/IBD/patient/video/pelvic-pouch-intro.htm
 
 
These videos ar great for anyone contemplating surgery.
 
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
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/4/2008 8:36 PM (GMT -6)   
That really sucks Paul and I'm sorry about the way things turned out...a real catch-22 since even an occassional colonoscopy can induce flares let alone the amount you had in such a short stint.

I hope you are able to find something to help before you have to get surgery, on the other hand, many whom have had surgery seem to be glad they made that choice but of course there are pros and cons to any decision.

Good luck to you!

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30506
   Posted 4/5/2008 11:00 AM (GMT -6)   
Hi Paul....You've been a test subject for us all...it's been encouraging to know what's "out there", but reality always kicks in seeing not all works for everyone.

You've had lots of wrenches thrown in along the way with c,diff, the meds, and didn't think about it..but as pb4 mentioned, the clean-outs and scopes.

I think your decision of surgery is definitely one I would have opted for a while ago. Interesting about the new polyps..good the doc took biopsies.

Keep us updated as to your journey towards surgery.

Hope the process goes smoothly for you. Have you checked out the ostomy forum on HW?

Spring-time thoughts your way....has much of the snow melted there?

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 !!!


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/5/2008 6:58 PM (GMT -6)   
Thanks for the links! I hope to peruse them soon :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 467
   Posted 4/21/2008 11:56 AM (GMT -6)   
Paul
 
How are you?  Have you decided on what to do next? 
 
I wanted to ask you - did you ever experience fatigue on the abatacept trial?  Because, mine is extreme. I am too tired to do anything at the moment. Even making myself something to eat is exhausting...  I am not sure if this normal, or just me..
 
Thanks and take care
 
 
Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 175mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/21/2008 12:53 PM (GMT -6)   
KSU,

My symptoms are about the same as they have been for the last few months. Up and down at about 6 to 10 urgent bloody BMs per day. My last and final Abatacept infusion was March 5th and nothing has changed since then. I am currently off all medications. At my request, my GI referred me to a colorectal surgeon just for a consultation. I haven’t made a decision about surgery yet. I’m waiting for the surgeon’s secretary to get back to me with my appointment info. I just called and left a message to ask when my appointment is. They’re not very fast.

I have always had fatigue associated with my UC no mater what medication I was on. Remicade is the only medication that made it worse and that was only after the first infusion. I expected the same thing to happen with Abatacept but it didn’t. I have felt absolutely no extra fatigue or any other symptoms from the Abatacept.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad 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.
Abatacept trial - no effect
 

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