Cimzia not working, heard of Vedolizumab?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

bluemeanies
Veteran Member


Date Joined Jun 2004
Total Posts : 1372
   Posted 7/30/2009 4:11 PM (GMT -7)   
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.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/30/2009 4:15 PM (GMT -7)   
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.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 7/30/2009 4:39 PM (GMT -7)   
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.

Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 7/30/2009 7:51 PM (GMT -7)   
http://www.medicalnewstoday.com/articles/136389.php

bluemeanies
Veteran Member


Date Joined Jun 2004
Total Posts : 1372
   Posted 7/31/2009 10:05 AM (GMT -7)   
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.
 


ivegottheguts
New Member


Date Joined Dec 2009
Total Posts : 1
   Posted 12/3/2009 8:39 AM (GMT -7)   
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!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 12/3/2009 1:10 PM (GMT -7)   
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.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/5/2009 6:32 PM (GMT -7)   
Two of us starting the MLN0002 (Vedolizumab) trial this month over in the UC forums.
Proctitis DX 1999, Pancolitis DX 2008
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 12/23/2009 3:43 AM (GMT -7)   
...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.
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/23/2009 8:37 AM (GMT -7)   
Sorry to hear that cfg. Let us know what they find.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 12/24/2009 4:25 AM (GMT -7)   
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
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 12/24/2009 3:29 PM (GMT -7)   
Just curious... how do they administer Vedo? A couple of shots in the arm/leg/ab?
Cimzia, Asacol


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 12/30/2009 11:16 AM (GMT -7)   
Hi everyone......still no news ....Vedo is infused into the arm, it takes about an hour
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 1/9/2010 3:24 PM (GMT -7)   
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
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/9/2010 9:57 PM (GMT -7)   
That sucks, take care. How is your GI going to treat you now?
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 1/13/2010 3:11 AM (GMT -7)   
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
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 1/13/2010 3:12 AM (GMT -7)   
Oh and now I'm booked into see an Immunologist too now. I'll keep you posted.
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 2/4/2010 4:06 AM (GMT -7)   
Hello again..I have been diagnosed with Rosacea, not happy about it at all unfortunately
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/4/2010 8:52 AM (GMT -7)   
Does that mean they're excluded lupus?
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 2/4/2010 6:28 PM (GMT -7)   
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.

Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 5/24/2010 11:04 PM (GMT -7)   
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.

Marm
New Member


Date Joined Nov 2010
Total Posts : 4
   Posted 11/20/2010 3:13 PM (GMT -7)   
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
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 11:12 AM (GMT -7)
There are a total of 2,734,769 posts in 301,246 threads.
View Active Threads


Who's Online
This forum has 151352 registered members. Please welcome our newest member, dillon91750.
364 Guest(s), 8 Registered Member(s) are currently online.  Details
ResilienceR, TOOTY, Lymepilot, tickcheckguy, 1000Daisies, smlafleur, Ineedhelp, ChickenArise


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer