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Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Vedolizumab AKA MLN002


 
02-03-2010, 05:30 PM   #61
Rob
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Thanks
02-03-2010, 10:14 PM   #62
saidinstouch
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Not a doctor, just a chemical biology/molecular biology grad student. Hopefully my input will help you make the right decision for you based on your needs and the information available to you.
02-03-2010, 10:39 PM   #63
Rob
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Ok cool

any input an advice greatly appreciated

I've been given til tomorrow to decide what I wish to do

do the MLN0002 vedolizumab trial
or do the ustekinumab trial
or hav surgery an live with a bag, a re section can't be done

do you know of any advantages of either of the two drugs over the other?
02-04-2010, 11:29 AM   #64
saidinstouch
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I believe ustekinumab goes after a new target that hasn't previously been used to treat crohns, but a couple companies are working on drugs for it (not 100% certain and don't have time to look up which companies and how many and what target). MLN0002 has the previous knowledge the tysabri works, but _should_ be free of the risks of the side effects, but until enough people take the drug and in various combinations with other therapies, we cannot be certain. The last choice you should ever make (at least in my book) is a permanent surgery leading to an ostomy when you have other options available to you. Even with an ostomy, your lifestyle has to change significantly and you are prone to other issues that can cause pain and discomfort, so it isn't a perfect solution either.

My personal choice would be the open label trial since it sounds like you are in bad shape right now. You need some form of medication more than the chance of getting it. If I were in your shoes, that is how I would chose. The other thing to look at are the trial inclusion/exclusion criteria. What dose of pred do you have to be on before you can enter? For how long? How long do you have to be off other biologics (i.e. remicade/humira)? For how long? A lot of trials are fairly standardized, but you might have to wait 2+ months to enter either trial simply based on your current medications. Also, find out if after 8-12 weeks you get your trial group switched in the double blind random trial. Or if you can be switched to the drug if you are on placebo after 8-12 weeks and your condition is worsening and you would be forced to exit the trial otherwise. These are all very important details about both trials and their design that you should know before entering the trial. Also, depending on your age, do you want to have kids in the next ~2 years? Many drugs request you to not have kids during their duration and for a period after due to the unknown effects on unborn children. If you do have a kid, then you have to be closely monitored (which in some ways helps them to study the drug effects on developing babies, but do you want to take that risk?). I think I covered most of the things I considered when I tried to get into a couple clinical trials. Good luck with your decision and let us know which one you chose.
02-04-2010, 11:51 AM   #65
Peaches
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*spot on* to what Said mentioned above Rob. Just about covered it all there. And - if it were me - I would choose the Vedo trial if they don't have to double blind you at some point. If I had super active disease, I would want drug *now* to try and save what bowel I have for as long as possible (unless there is just no chance for it to become healthy again).
02-04-2010, 12:51 PM   #66
Rob
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Thanks for all the info an help guys

I'm most prob going the direction of the vedo trial so I know I get the medication straight off

there is a chance after 6-8 weeks I think that I could be placed onto a placebo too see if it is working etc
but that's still 6-8 weeks of recieving the drug an according too the paper work there is a small loop I think where if you begin too decline from the placebo they may reintroduce the drug again ???? ( not 100%) either way I'd rather know I recieving a drug than too not know (usteki trial)

the way I see it if this drug fails I stil can fall back on the ostomy surgery at any point anyway
but once I go that route can't go back

so looks like we gained another guinee pig for mln0002. Lol
02-05-2010, 12:18 PM   #67
saidinstouch
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Good luck and let us know how you do with it. Tysabri really helped me for a while, but after 5-6 months I couldn't handle the worry about PML developing. I think MLN0002 should be free of that concern since it is a better targeted drug.
02-07-2010, 07:41 AM   #68
ThatGuy2006
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Not to steal your thunder here Rob but I as well am starting on Vedo on the 18th. If you want, I could update my status as well that way other people who are considering this drug will have some sort of real life "testimony" as to if it helps or not. I'm hoping this is the one for me because its bye bye Colon if not

Later and Good luck Rob and Ezio!
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02-07-2010, 07:53 AM   #69
Rob
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Be my guest at the thunder lol

but seriously yea it's great too know a few people doin this drug
if or when i get onto the trial it will be great too bounce experiences/problems etc off of

the more we know etc the better off we can all be

I'm seriously hopin i get onto this drug an that it's the one for me
I've already tried remicade an that failed
I'm on immuran and salafalk aswell as predniscilone and that's not working
I'm on high dose of hydrocortisone ATM (only thing keepin me stable right now) but i can't stay on this as it's a hospital administered drug only here and 2 there are too many side effects

So once I come off it I'll begin the rapid spiral down again
an that will then result in surgery an a bag for me

so if you or anyone else wishes too assist with information - I'm all ears
and once I know more an somethin that may of be assistance to others I'll be happy too share
02-12-2010, 05:43 AM   #70
lucyyenic
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"You can get a weird taste in your mouth with any IV and they tend to add stuff to both drug and placebo to try and normalize or weird up the flavor of both sufficiently so you can't tell. I am still hoping you are on the drug and all, just wanted to let you know. I've experienced that weird taste with remicade, but not yet with Tysabri so it can be hit or miss depending on the drug, the facility, and probably even the saline used, as well as your body at the time."
I think he is right.
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02-12-2010, 08:31 AM   #71
Peaches
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Hmmm - I have been on Remi over 6 years and have never experienced any off taste in my mouth from it.

Lucy - you need to remove your advertising from your signature please - it is not allowed on this forum.
02-15-2010, 11:50 AM   #72
Sue-2009
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Wow! Peaches..I just read that you are on remicade for quite some time...I'm am glad its working for you...Sue
02-26-2010, 08:07 AM   #73
ThatGuy2006
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Hey everyone, just letting you know I started the trial yesterday and got my first dose. Everything went well but I felt a little tired afterward...although, i did forget my pred yesterday morning so that may be why too. I'm not feeling a difference yet as far as my inflammation and i'm sure its too early but I have had a ton of energy today which has been my biggest battle. I've got another infusion March 10th. Thanks to everyone on this forum for providing a place for us Crohnies to come and talk about the three biggest things in a Chronies life....Medication, Food, and Poo :P

I'll keep you guys up to date
02-26-2010, 03:53 PM   #74
Ezio
 
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yesterday i have my 5^ infusion.
Now i stay better than november (before to start the trial) but now i dont stay well than one month ago...
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My story:

Ulcerative colitis since 2005

Predisone for 20 months

Tried Infliximab and azathioprine

Trials: Budesonide MMX (2008) and Vedolizumab 2010)
september 2010: humira
02-26-2010, 04:00 PM   #75
Rob
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Hi Ezio

so have you plataued? Or hav you gotten worse than a month ago?
02-26-2010, 04:14 PM   #76
Ezio
 
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worse..a little bit...
02-26-2010, 05:06 PM   #77
Rob
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Ah bugga

hope it's jus a minor set back for you an things improve again

approx 2-3 weeks an hopefully I'll be on this trial too
02-26-2010, 05:23 PM   #78
Ezio
 
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thanks..
04-01-2010, 05:22 PM   #79
Ezio
 
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hi all!!

i didn't improve since the trial started. Maybe the next week I'll start mesalazine mmx (which is on sale since january here in italy)
07-28-2010, 03:35 AM   #80
Ezio
 
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bad news:

in last weeks i lost every benefit from vedolizumab so i go out from the trial.

my actually drugs is predisone...
05-31-2011, 08:45 AM   #81
jenthegr8
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Hi Shmooda,
glad to see that someone is having good success on this trial. I start tomorrow. I was on Remicade for 3 years- worked like a charm. Then, it quit working. Humira didn't work and I had a bad injection site reaction... so this is where I'm at.... I'm glad to see that it's having good success for some. Again, I could be on the placebo or the drug, fingers and toes are crossed it's the drug. I'd love to heave from anyone else on the trial....?
05-31-2011, 01:22 PM   #82
oregon
 
Join Date: Jan 2010
Location: London, United Kingdom
Ezio - Sorry to hear that Vedolizumab stopped working for you.

Jenthegr8 - Good luck with the trial.

I have been on the trial for almost 18 months now. I have been on open label since January 2011. I have been doing really well. I am off steroids for the first time in 8 years (since November 2010). It is a miracle for me.

I have really bad UC and nothing except high dose pred has worked in the past 10 years.

It is worrying when I hear of people for whom the drug has stopped working. There is one other patient at my hospital who has crohns and she is doing quite well.

Keep us informed Jen about your experiences!

Best wishes
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Pred 5mg
Azathioprine 125mg
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MLN002
05-31-2011, 01:42 PM   #83
gt91
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@oregon, glad this drug is working for you, hope it continues to work for you.. I also wanted to go on trial (unfortunately, it's not open-label). Has this drug put you in complete remission? Have you experienced any side effects?
06-01-2011, 03:42 AM   #84
oregon
 
Join Date: Jan 2010
Location: London, United Kingdom
gt91 - Yes, it has put me into remission. My only symptom now is mild urgency first thing in the morning. But, I can live with that. I have tried every drug for UC/Crohns out there, including other trials and nothing ever worked. It saved me from surgery.

I havent had too many side effects. The main one is insomnia the day after the infusion (but only mild). And I used to get strange dreams, but that seems to have stopped now. I got some neck pain now and then but I haven't noticed that either lately.

If you don't see an improvement after the first 3 infusions, you go straight onto open label.

Hope this helps,

Best wishes
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