Posted 10/31/2007 8:04 PM (GMT -7)
Hi Paul & Sara. I've been on the Phase 3 Abatacept trial for UC since April 2007. Seems I scored the placebo in the initial trial phase and was moved over to the open Label phase late June 2007.

There are 5 other people in the trial with me that I know of. 3 of us have UC, 1 has chron's and one has both.

For those of us with UC, it seems that Abatacept DOES work, it just takes quite a bit longer then it does for the chron's people. 2 to 3 infusions for chron's and around 4 to 6 for UC.

I have had 5 open label infusions (one per 4 weeks) in the open label and it has just started to work for me as I have been able to reduce my prednisolone intake from 30mg a day down to 4mg without the symptoms flaring up.

I am also sleeping better (I was having to wake up and go to the toilet around 8 times a night, now its around 2 to 3 times), I can sleep on my front, back, sides now rather then only on my back, and the urgency in which I need to find a bathroom has reduced quite noticably. I used to need to find a toilet within 2 minutes where as now I have about 15-30 minutes.

My other medication includes Balsalizide and 6-MP.

Outside of the meds, I am also taking:
- fish oil (6 x 1g caps, 3 times a day);
- Ultrabiotic 45 bacterial probiotic (from bioceuticals) (1 capsule, twice a day);
- SB Floractiv yeast probiotic (from bioceuticals) (1 capsule, twice a day);
- L-Glutamine suppliment (1 tsp, twice a day);
- Protein and vitamin suppliment.

And a good dose of exercise each day. I prefer swimming as it doesn't knock my insides around as much.

Hope you also get some solid results from this trial too!

--------------------------------------------

"We are the music makers, we are the dreamers of dreams"
Posted 10/31/2007 9:29 PM (GMT -7)
Where are you guys at? My mother-in-law seems to think the new doc I have in Houston would know about all these trials and put me in one (though I would still like to have another child before that). Anyway, he didn't say anything about any options other than remicade and imuran for me, even after we asked about 10 times. I'd gather he knows, but couldn't get people into a study like that here.
dx 4/05 with pancolitis UC after birth of my second child... meds worked randomly
SCD and vit e enema remission for 18 months and had another drug free baby 10/06
Let flare get out of control and even steroids wouldn't work 7/07 - docs wanted surgery
lialda x4 daily and started remicade 10/26/07
 
 

Posted 10/31/2007 9:37 PM (GMT -7)
Hi DeniseW. I'm in Australia. Though if you want a list of trial sites world wide, check out the following link:
http://clinicaltrials.gov/ct/show/NCT00410410

I did the same thing. Let a flare get out of control rather then go right in and see my specialist. Very stupid of me and it has taken nearly 2 years to pull it back under "some" kind of control. I have sworn to myself that I will never make that mistake again!

I am now also a huge fan of fish oil, glutamine and probiotics. I have found that they have helped a great deal as well.
Posted 11/1/2007 1:29 PM (GMT -7)
Thanks for the site! I will look into it again when I'm done having kids. I'd love to be in the gene one, but I didn't see it on there. My doc says they have 4 of the genes for it, so I pray gene therapy isn't too far down the line. Probably longer than I will make it, but maybe it'll be there for my kids.
dx 4/05 with pancolitis UC after birth of my second child... meds worked randomly
SCD and vit e enema remission for 18 months and had another drug free baby 10/06
Let flare get out of control and even steroids wouldn't work 7/07 - docs wanted surgery
lialda x4 daily and started remicade 10/26/07
 
 

Posted 11/1/2007 8:32 PM (GMT -7)
Severin, thanks for your experience. They don’t reveal who was on the placebo until the entire study is complete and all the data is in. If you didn’t respond to the blind portion of the study but did to the open label then you may have had the placebo. You just don’t know for sure. Unfortunately if Abatacept DOES work for some, it doesn’t necessarily work for all. No current treatment works for everyone with UC. I’m glad that it is helping you. Your symptoms were much worse than mine.


Denise, I’m in Toronto, Canada. Most doctors won’t recommend you enter a study unless you have already tried most conventional treatments. Most studies are done at teaching hospitals and you may need a referral. If I were you I would try Remicade and Imuran before considering a clinical trial.
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
 

Posted 11/2/2007 10:12 AM (GMT -7)
Thanks for update, Paul. You are really doing all UC patients a big favor by contributing bloods to the other studies, too. Good luck with the next stage of trial. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

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