My Third Abatacept Open Label Study Treatment

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/8/2008 10:50 PM (GMT -6)   
For those that have been following my Abatacept study for UC, I had my third open label treatment last Wednesday, 4 weeks after my last one. I arrived at the hospital about 12:15pm and had to wait 20 minutes to see the study coordinator. She gave me $20 for this visit but did not require any blood, urine or stool samples. She called the pharmacy to have them prepare the Abatacept. She then called in the study doctor and he did a quick physical examination and asked about my UC symptoms.

Since my last visit a month ago, things have gotten worse. For the last 2 weeks I have had 10 to 12 urgent bloody BMs per day. I haven’t missed any work because of it but it was very difficult. He then said that at my next visit in another month he would have to decide whether I continue on the open label or not. If my symptoms do not improve, even a small amount, he will have to take me off the Abatacept.

The doctor then brought up my Alaskan cruise that we talked about before at an earlier visit. Last time I asked him if he could give me prednisone for the cruise if I didn’t improve by July. At that time he just said we would wait and see. He was in a hurry then. This time he told me he visited Alaska when he was in his early 20’s and had a great time. He said I had to try the Skagway's White Pass Railway and he would help my UC as much as he could. I sure hope he can. The cruise is booked and I’m going no matter how bad my UC is. At least on a cruise there are lots of washrooms and I don’t have to leave the ship if I am feeling bad.

It was now 1:30pm and the study coordinator let me go for lunch and told me to meet her at the infusion centre at 2:00pm. I arrived on time but I had to wait another 30 minutes before the study coordinator showed up. I fell asleep waiting for her. The infusing centre had a new wide screen plasma TV mounted on the wall and digital cable box installed since my last visit. They still had the portable DVD players and a selection of DVD movies. She finally showed up at 2:30pm and hooked up the IV. After taking my vitals, blood pressure and temperature, the treatment started at 2:45 and was over by 3:15. I left the hospital at 3:30pm after my vitals were taken again.

When I got home there was about 6 inches of snow in the driveway and had to shovel it. Luckily I have a snow blower. The day after the infusion I had only 6 BM’s with slightly less urgency than before. Today I only had 3 and the day is almost over. I hope this is the start of an improvement but it is still too early to tell. My next treatment is scheduled for March 6.

Thanks,
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 2/9/2008 7:31 AM (GMT -6)   
Hey Paul! Thanks for keeping us posted!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 2/9/2008 12:32 PM (GMT -6)   
Paul...it does sound promising...I hope you see improvement daily!!
Thanks for the updates, always appreciated.

Hope you're totally better (you deserve it) for your cruise..there's lots of time yet.

quincy


*Heather*Status: mini flare Dec 28... tapered to every 3rd 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 ....bromelain 1 - 2x 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 !!!

Post Edited (quincy) : 2/9/2008 11:36:30 AM (GMT-7)


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/9/2008 12:39 PM (GMT -6)   
hey paul, thanks for the update. I just learned that my GI center, here in north carolina, is also doing a clinical trial for abatacept in UC. I didn't even know it was being tested stateside yet.

anyway, I really hope you continue to feel better and I am glad you will go to alaska no matter what. you have to control UC, not vice-versa (as much as possible). I have heard alaska is beautiful and I am sure you will love it. it sounds like the cruise is far away (6 months??) so you still have time to get into a better state of health.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/9/2008 10:50 PM (GMT -6)   
Thanks Tab, Quincy and UCinNC.
 
The Abatacept trials for both UC and CD are being conducted all around the world. Check out the following websites:
 

Our cruise leaves Vancouver July 30 but we plan to arrive on July 27 and see a little of Vancouver first. The cruise is one week long with several stops before reaching our destination of Anchorage. My wife has a cousin in Anchorage and we plan to stay another week with them before flying back to Toronto.

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
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5181
   Posted 2/10/2008 11:31 AM (GMT -6)   
When you mentioned the snow removal task, Paul, I thought to ask about your vitamin D level. (Bloods) My gastro says it should test at 30 or higher. Low vit D levels are another factor that can affect no. of bms daily. You have so much to do, especially with the winter chores added on. No wonder you fell asleep waiting for the study coordinator! Hope the Abatacept starts to kick in soon. The cruise is definitely something to look forward to! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 2/10/2008 11:39 AM (GMT -6)   
Hey Paul, I'm so glad you are keeping us updated as this may be a treatment option for me. The Remi is working well, but my doc wants me to try Abatacept. I'm hoping that it is starting to work for you. Darn that snow! It's so pretty but is always begging to be shoveled while in the driveway! Take care, and gosh you have something wonderful to look forward too!
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/10/2008 6:02 PM (GMT -6)   
Hey Paul. I started to notice small improvements from 14 days after my 3rd infusion. Nothing earth shattering per se, but the greatest thing I noticed was I gained quite a bit more control. Instead of having 1 minute to get to the toilet, I had 5.

The changes became more pronounced after the 4th infusion.

Seems Abatacept takes quite a bit longer to work for UC people then for Chrons, so if you can, try to get at least 5 infusions before giving up. It does take a while to work, but it has helped myself and the others in my trial heaps.

Keep us posted!
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.

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