Question for you re: Vedolizumab Study

Hi all,

I have a question for you guys regarding a study I could be included in for the drug Vedolizumab. I don't know the exact chemical nature of the drug (it's an infusion), but I know that it has had some positive study results as of late...

I was diagnosed with Ulcerative Proctitis in October 2011 (22 weeks pregnant and a *victim* of excessive antibiotic use), progessed to Pancolitis in February 2012 (hospitalized for 5 days), and as of today I still am not in remission or anywhere close to it...

Meds are in my sig--in October 2011 with the UP diagnosis, was prescribed Asacol and Rowasa enemas. Did not give me much relief. After hospitalization in February, was on Prednisone 40mg/day and Apriso instead of Asacol (still doing Rowasa enemas). Also in February I started Remicade, and in April/May we added on Imuran as well.

I don't have *good* days and *bad* days. I have *okay* days and *bad* days. On an okay day I will go to the bathroom 3 times with mostly formed stools. On a bad day it is more like 6 times with cramps, abdominal pains and diarrhea. Have eliminated all dairy/sugars and most carbs. My usual diet is a banana in the a.m., a hard boiled egg with some avocado and hummus with rice crackers for lunch, and chicken and brown rice for dinner.

Now, I completely recognize that I am doing much better than I was in February of this year (25 bloody movements a day). But. I am still far from normal. I ALWAYS have a weird or sickly or uncertain feeling in my gut...I don't wear Depends anymore but am still FAR from confident outside of the house.

It's just that with all the drugs I am taking, I really expected to be MUCH better than I am.

So, my question is this...I can participate in an open-label study with Vedolizumab, but I cannot take Remicade concurrently. I have to be off of it for 8 weeks before starting, too. So--do I ditch the Remicade (have had 4 infusions so far), knowing that I might not be able to go back on it, to try the Vedolizumab? Or have I not given it enough time to work its *magic*? Also, I am NOT currently receiving the max dose of either the Remicade or the Imuran. Should I increase those meds? Is there really that much difference between 100 and 150mg of Imuran?

Has anyone else been in a study with Vedolizumab? Opinions? Thoughts? Recommendations?

Eager to hear your thoughts!

Ta and take care,
Lisa

hello Colah - did you end up trying the vedolizumab - how did it go for you?

My understanding is vedolizumab targets inflammation in the gut only, where TNF blockers like remicade suppress the entire immune system. That means vedolizumab should have far fewer side effects potentially. Sadly it sounds like it will be years before it will be approved and available for UC

When I was in getting my Anti IP 10 antibody infusion - I am on the MDX1100 drug trial - the guy next to me is on vedolizumab, and has been for about 4 years (I think that is what he said?) and he is doing incredibly well on it.

He said that he was about a week away from a permanent ilieostomy - and our GI put him on the VED drug trial, and that it took about 4 - 6 months to work. He said that he crashed BIG TIME when he first started, hospitalised and everything, but that they perservered, and it started working, and he has not looked back.

He is back to doing everything he used to do, when he was (in his words) 'a youngan' water skiing, reef diving, marathons, etc, and has been in remission all that time, eats what he wants, and does what he wants.

He gets it once a month, and he says that he has never felt better.
As for all the other info - can't help you, but he seemed really happy with the results.


Meanwhile - have you looked at this drug trial

clinicaltrials.gov/ct2/show/NCT01294410?term=UC+AUSTRALIA&rank=5

I started on the open label, and have just had my second infusion on the open label, and I am starting to feel definate results.

It could be an option?

I also disagree with Eva Lou. I am a biologist, and this drug works nothing like Remicade or Humira. From all the research I have done on this drug, it seems like the best option out there right now, and If I were given the opportunity to get on that study, I would jump at it. It is suppose to have much less side effects than the TNF blockers. Good luck with your decision. Feel better.

I wonder has anyone in this study group developed an anti-body against Vedo?

There are a lot of mixed responses. I'm quite positive that Vedo would be successful and I wonder how the body would build an anti-body against it, if any at all.