update to the clinical trial I am in

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Veteran Member

Date Joined Jun 2004
Total Posts : 1372
   Posted 1/6/2010 1:56 PM (GMT -6)   
My update: I am in a clinical trial for MLN0002 for my crohn's disease. I've been in it for about 4 months now and am on the maintainance phase, which means an infusion about ever 4 weeks. Right after the infusion I have bad night sweats for a few days. My poo gets solid but is very painful passing thru my intestines and requires much straining to get out, thus aggrivating my internal hemhorids. After about a week of that my poop starts to get less solid and the amount of times I go a day increases, the pain staying about the same just in different gut areas. By the third week I am back to mostly mush poo and going 6 or 7 times a day. Every morning I start waking up after about 5 hours of sleep with gut pain and getting up several times to have a bm or try to.

So far no drugs have put me in remission. When I was on Cimzia, I got crohn's arthritis, I already have chronic tendinitis in my hands and feet. So far my joints are hurting worse and swelling and the tendinitis is not better. I am getting an infusion tomorrow, at week 3 instead of 4. I'm not sure if this is helping me and if it is worth continuning, but I've not decided to quit yet.

Hope everyone is doing ok. It's cold and snowy here in Colorado.

Veteran Member

Date Joined Apr 2006
Total Posts : 1884
   Posted 1/6/2010 4:13 PM (GMT -6)   
Thanks for the update. I hope you find something that works for you!

Veteran Member

Date Joined Jan 2006
Total Posts : 3129
   Posted 1/6/2010 4:59 PM (GMT -6)   
Hey blue....I wish this was doing more for you. I hate to hear you have pain. I do give you credit for sticking with it though. May the Yellow Submarine come along for you soon!
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

Regular Member

Date Joined Mar 2005
Total Posts : 452
   Posted 1/6/2010 11:44 PM (GMT -6)   
I was on the MLN0002 trial for about 2 months and noticed absolutely no improvement so I got off of it. I just started methotrexate so hopefully that works.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 1/7/2010 6:36 AM (GMT -6)   
Sorry to hear that it is not working to your liking.
I hope you find a med that will work for you to achieve remission.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

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