Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Vedolizumab MLN002 anyone on this


02-23-2011, 12:02 AM   #1
smhdoormouse
 
Join Date: Oct 2009
Vedolizumab MLN002 anyone on this

Worst headache of my life And a little blurred vision which can be a fatal side effect from the study drug i am on which has seemed to be helping i am hoping that it is just a bad headache had similar before its has been awhile since a received the drug and i am due for it again but dont know what will happen if i am having a reaction this was my last option as the many other things hadnt help or was allergic to them ugh just needed to vent i go to the research nurse on thursday i will tell her about them then and hope its not the drug or if it gets worse i will go to the er although i dont want to go for a headache ugh i hate my body I did talk to the study nurse earley today and she said try to get the headache to go away and see if with the headache gone if the vision gets better I have tired tylonal ,sinus meds ,cold packs nothing is helping ugh i hate my body
02-23-2011, 01:57 AM   #2
AndiGirl
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Join Date: Jan 2011
Location: Alaska

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I have never heard of Vedolizumab MLN002. Is is given in the IV?
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02-23-2011, 01:10 PM   #3
glum chump
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Join Date: May 2010
Location: British Columbia

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I was on Vedolizumab late last spring (started in May). After the initial doses that were a mix of both placebo and drug, I was placed in the "non-responsive" category and started getting the drug. I had to drop out of the study because I started getting really intense scary dreams where I was unable to distinguish my "dream world" from the "real world." So I would wake up after a nightmare and in my 'wake mode,' I would continue to act out the dream. My partner found me one morning in the closet because I was hiding from the people who had been chasing me in my dream. Needless to say, I dropped out of the study, especially with some of the risks of PML associated with the drug.

Smhdoormouse, I hope you're able to find some relief for your symptoms. Like you, the V study was my last stop since I've failed all other meds out there. Hopefully, the nurses will know what to do, but ultimately, it is your decision based on your symptoms and the side effects of the drugs. It's a tough call and I wish you all the best.

AndiGirl: yes, it is given by IV infusion. It's currently a Phase 3 drug trial.
02-23-2011, 06:18 PM   #4
Rob
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Join Date: Feb 2010
I've been on this drug for 12 months now an about to begin the long term study where I'll recieve the drug free for the next 2-4years or until it's released on the market which is great

I've got nothing but praise for this drug, I've gone from basicly living on my toilet to almost having a proper life again
hoping I'll be better in few more months etc
considering 12months ago I was about to have an illostomy bag for life I think the drug is great
also I've gone from only being able to eat dry toast, crackers etc to being able to eat what ever I like is a bonus, and I mean anything. Like popcorn, corn, nuts, onion, lettuce etc
just need to keep to moderation an watch the curries etc but hey who's complaining

my biggest concern is trying to loose weight but that's something I've always had issues with

if I was you I'd seriously talk to the trial nurse an maybe hav an appointment with the trial doctor in charge
perhaps u need to postpone your next infussion an figure out what's causing your headaches etc

hopefully it's not the drug andbor anything serious an you can continue your recovery

good luck
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03-22-2011, 03:10 PM   #5
gt91
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Join Date: Mar 2011
Rob -, how are you doing on the drug recently? I'm going to discuss with doctor to see I'm eligible to enroll in the trail. Crossing my fingers hoping this drug will work on me.
09-25-2012, 01:50 AM   #6
pmitra0123
 
Join Date: Sep 2012
Location: California
Rob -I too am currently on it, am getting the real drug, but not seeing any improvmeent yet - I have been on it for 2 months and am going for 3rd infusion tomorrow. I was wondering, how long was it before you started seeing noticable improvments? Thanks so much!
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