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Cimzia not working, heard of Vedolizumab?

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Crohn's Disease
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Posted 7/30/2009 5:11 PM (GMT -6)
I've been on Cimzia for 6 months and it is not working for me. My gi said today there were no other treatment options for me (I do not have insurance). She suggested a clinical trial for Vedolizumab as it may help people not responding to other anti tnf drugs. I was wondering if anyone is already in the trial. Thanks.
Posted 7/30/2009 5:15 PM (GMT -6)
I haven't heard of it, blue, but am thrilled to know that there are more meds in development.

Good luck with your decision. Will you keep us up to date with anything you learn? I'm sure many of will be excited & interested to hear about your experiences.

Ivy.
Posted 7/30/2009 5:39 PM (GMT -6)
Never heard of it. If you haven't already tried ustekinumab, it's in phase II trials and a prerequisite is having failed another biologic.
Posted 7/30/2009 8:51 PM (GMT -6)
http://www.medicalnewstoday.com/articles/136389.php
Posted 7/31/2009 11:05 AM (GMT -6)
Thanks for the replies. I have to be off the Cimzia for 2 months before starting the trial, so it will be late September when I start. The drug is suppose to not cross over into the brain, thereby eleminating the side effect of the brain infection other bioligics can cause. It is a 52 week trial with lots of testing. At least I will get free scopes (woo hoo). I'll keep updating as I go.
Posted 12/3/2009 9:39 AM (GMT -6)
Hiya blue! I have tried everything under the sun for my crohn's and to no avail. Just left with doing the trials-lucky me. The perks are I might just happen upon something that actually helps. So my GI Doc wants me to try one of two trials: (door number one) Vedolizumab or (door number two) Ustekinumab. Hmmmmm...I've been hitting up sites and trying to find any forums on both these meds. Both have ups and downs(go figure, right?!) The V is way more intense than the U, although I'm pretty sure its because of the "first testing on humans factor".
And really, to be honest to only reason I'm contemplating either one of these is not just the intestinal issues from crohn's but the joint pain I get with the flares- its kicking my butt! If you decide to try it, keep me posted ok? It would be at least comforting to know I'm not walking down this dark alley alone. Thanks!
Posted 12/3/2009 2:10 PM (GMT -6)
Good luck with your decision.

I hope you'll keep posting here so we can see how you're going, and share your journey?

Welcome,

Ivy.
Posted 12/5/2009 7:32 PM (GMT -6)
Two of us starting the MLN0002 (Vedolizumab) trial this month over in the UC forums.
Posted 12/23/2009 4:43 AM (GMT -6)
...I'm currently on the trial since July 2009. Its a long process so far, but it has worked up until now )....unfortunately I have had a drug reaction of some kind and am now being tested for SLE or Lupus (Drug Induced)...... I'll keep you posted.....So there are obvious risks, but noting else worked for me so this is my chance.

Just so you know there havent been any cases of PML so far so on the trial thats good.
Posted 12/23/2009 9:37 AM (GMT -6)
Sorry to hear that cfg. Let us know what they find.
Posted 12/24/2009 5:25 AM (GMT -6)
Absolutely...just waiting for the rest of the results to come back ....the tests that are back show drug induced reaction and antibodies.....but I havent had a chance to sit down and talk about it yet...I'll be in touch
Posted 12/24/2009 4:29 PM (GMT -6)
Just curious... how do they administer Vedo? A couple of shots in the arm/leg/ab?
Posted 12/30/2009 12:16 PM (GMT -6)
Hi everyone......still no news ....Vedo is infused into the arm, it takes about an hour
Posted 1/9/2010 4:24 PM (GMT -6)
Hi again

Well it turns out I have tested positive with an antinuclear antibody which is associated with SLE ...the rash is still there so I knew something wasnt right.....unfortunately I have been removed from the trial and now have to visit a dermatologist and maybe an immunologist too. They cannot tell if if was drug induced or not right now ..I was on doxycycline for years and this maybe the cause also ...I'll keep you posted
Posted 1/9/2010 10:57 PM (GMT -6)
That sucks, take care. How is your GI going to treat you now?
Posted 1/13/2010 4:11 AM (GMT -6)
Hi and thanks Rider Fan .....Its back to the public system for me ....I'm really not sure now as a lot of medication didn't work for me. Im in New Zealand so a little behind with the times compared to the USA
Posted 1/13/2010 4:12 AM (GMT -6)
Oh and now I'm booked into see an Immunologist too now. I'll keep you posted.
Posted 2/4/2010 5:06 AM (GMT -6)
Hello again..I have been diagnosed with Rosacea, not happy about it at all unfortunately
Posted 2/4/2010 9:52 AM (GMT -6)
Does that mean they're excluded lupus?
Posted 2/4/2010 7:28 PM (GMT -6)
I was one of the first ones in Chicago to go on the trial. I had to go off Humira completely and I think be off for about 2-3 months. I got really sick waiting for my date to start the trial. Once it finally came there was all sorts of things that I had to do. Call in a 5 min phone message EVERY single night. I was on it for about 2 months and no it was not the placebo. It did not work unfortunately and my doctor said only other option is to take out my colon. I told him no, so he ended up putting me on methotrexate which is finally starting to work a little bit.
If you end up getting back into it, just make sure you have time to do all the requested stuff for the study. Like sign tons of paperwork, questionaires, follow up visits and phone calls.
Luckily it's all payed for and they pay you for some stuff too.
Posted 5/25/2010 12:04 AM (GMT -6)
I am in Sydney Australia and have just started on the trial. I am on an open label trial so I am guaranteed to receive the drug. I had my first infusion almost a week ago, and have started suffering from excrutiating headaches. I am hoping they're not connected to the drug. I have no shown any improvement so far, in fact in some ways I feel worse. I am hoping to show an improvement at some point.
Posted 11/20/2010 4:13 PM (GMT -6)
I am wondering of the people here who were on the trial...How are you doing with it now?
My son is considering taking it.
thanks for your time
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