I got the open label!

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Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 1/24/2009 1:54 AM (GMT -7)   
Well, after much debate with the doctor as they said I "marganially" improved and my mom was sitting in the corner shaking her head.  I have been at least an hour late for work for the last 6 weeks (since getting off steroids basically), I'm sleeping all the time, I hurt all the time, I'm on pretty much 5-6 narcotics per day, the bowel movements have slowed, but DUH doc it's because of the narcotics AND my regular GI gave me Levsin, which ALSO helps!
But, anyway, I got the open Label ABT-874.  Not instant relief at this moment nor any signs of feeling better yet, but that's ok.  I will receive 3 infusions of the 700 open lable ABT-874 and if I'm not any better they would keep me on it, if I am better, they would potentially take me off of it to see if I lapse.  All that said if I'm NOT Better in 3 months, the doc will pull me from the study, most likely, and start something else.  March it will mark nearly a year since this flare truly began.  I'm just so frustrated and want to be in remission.
All that said, I've lose 4lbs on Weight Watchers! :)  That is SLOWLY boosting my ego..
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 1/24/2009 2:50 AM (GMT -7)   
Well, that sounds very encouraging, Kaycie. I think it's always helpful when doctors set a deadline beyond which they will abort current treatments and try something else. It stops us from languishing and suffering with no hope for improvement...

And congrats on the weight loss!
Co-Moderator Crohn's Forum.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 1/24/2009 8:03 AM (GMT -7)   
Sure hope this works for you and you get feeling better soon.

Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Jul 2007
Total Posts : 239
   Posted 1/24/2009 9:29 AM (GMT -7)   

Glad to see you here, I was going to put up a post directed at you. I remember that you were going to start using a Wii Fit slowly, to start getting in shape! I just got one and I wondered how you were doing on it? I'm trying to lose weight too, but this prednisone I'm on is not helping! I've been doing 30 minutes a day on the Wii 4 of the last 6 days! But do my thighs hurt!! Sore muscles, and tylenol and doesn't help! Maybe we can be Wii buddies! Feel free to email me! And congrats on the meds and the 4 pounds!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, entocort, vicodin as needed, Humira, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.

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