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03-22-2010, 10:57 AM   #31
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Hey Guys,

Just to give you an update on my personal experience with Vedolimuzab.

I felt good for a couple of weeks after my second dose. However, I had a flare then and kinda felt like the drug was wearing off then for the ensuing 10 days.

I got registered as a non-responder with the trial as a result. What that means is that the placebo and lower dosage were eliminated for me and I remain on Vedolimuzab on a monthly basis.

I felt fairly crapola for the last ten days before getting the drug again, I must say. I got it again last Wednesday and I am back to feeling good again now.

I just hope that I get longer than the approx 18 days well being this time.

Thanks!
__________________
================================================== ==================================
Crohn's disease in rectum and Lower left side
Diagnosed in 1983
Taking Imuran (Azathioprine) 125mg
Asacolon (Mesalazine) 3200mg
Tried Remicade / Humira / Vedolizumab but no joy
03-22-2010, 12:38 PM   #32
theend2
Senior Member
 
Join Date: Mar 2010
Nick what was the average prednisone dose you were on during that 5 to 7 years of being on it?
03-22-2010, 02:33 PM   #33
Rob
Senior Member
 
Join Date: Feb 2010
I hope that things improve for ya Nick

I'm headin in for my second dose today, things seemed a little betta after my first dose, but not sure if that was jus a coincidence or not?

Guess time an more doses will tell
__________________
Now on Vedolizumab MLN0002 - woohoo!! Hope this works
--------------------------------------------------------------
200mg immuran daily
1500mg mesalazine salofalk daily
Somac 40mg daily
NO MORE PRED YAHOO!!!
--------------------------------------------------------------
Tried remicade and didn't work
03-23-2010, 09:42 AM   #34
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
theend2 said:
Nick what was the average prednisone dose you were on during that 5 to 7 years of being on it?
I was on 40mg orally for several months and then a maintenace of 10mg for about 2 years.

I took predfoam then for three years - which are 20mg enemas.

Why do you ask?

And Rob - hope it goes well for you. I am definitely improved again after my third dose. I just don't know for how long!
03-23-2010, 10:11 AM   #35
Sue-2009
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Join Date: Nov 2009
Location: Michigan
Hey Guys, thanks for keeping us posted. I am always lurking I am hoping this is the med...For most of us...I am hoping there is something that will have a higher success rate than what they've got out there...And you guys are it... Sue
03-23-2010, 12:02 PM   #36
theend2
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Join Date: Mar 2010
I was just wondering because I am also on long term prednisone use. I have been on 40 to 60 mg for the past 2 and 1/2 years or so. Just wondering 5 to 7 years is a long time to be on 40mg so I was just wondering so I see it was around 10 mg for most of that 5 to 7 years. Thanks.
03-23-2010, 01:51 PM   #37
Rob
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Join Date: Feb 2010
Well had my second dose yesterday and so far so good.
Once again I felt fairly tired a few hours later and slept pretty well. (not a bad side effect lol)
glad that ya feelin better again Nick, hope it lasts this time

I've got four weeks now til my next dose so I'll see how long it lasts

I've noticed a lesser amount of bm a day(12-19) still high but far less than my 30-40 times a day, and not as urgent either instead of a 5-10 sec warning sometimes I get a min or two
also less blood, and a firming of my stools
I don't hav the constant stomache cramps either- I stil get some but it's not 24/7 like b4 so I guess they more noticable now wen I do get them if that makes sense
I'm still on my normal meds, and will be for a while, they want too wait for the drug to fully kick in then ween me off the meds if possible

how often do you get your dose Nick? Mine is every four weeks now.
But if I show a huge improvement by dose 3 I could gobon placebo but from what trial nurse has said my improvements aren't enough as my bm are stil too high, so hopefully I keep gettin it as I can def say I've noticed a change
plus she said most people notice the biggest change after the 4-5th dose, so fingers crossed

keep ya all posted
03-24-2010, 10:47 AM   #38
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Hey Rob,

I'm on every 4 weeks as well. Because I got registered as a fail, there was no placebo for me. I reckon you might be the same... I think if they see a full recovery they want to prove that that recovery was from the drug. Hence the placebo.

Interesting what you say about the 4th or 5th dose seeing the biggest improvement. I am the first to try it in Beaumont Hospital here in Dublin so I aint getting the benefit of any experience... and even so, I think they are reluctant to say anything because of the 'blind' nature of the trial.

Still feeling o.k. now. BM's are definitely down. Just hope it lasts through the four weeks. I was talking to the Gastro today and he said the next step would probably be surgery to give the bowel some rest. I sincerely hope not!

I hope it goes well for you, Rob!
03-24-2010, 11:17 AM   #39
Rob
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Join Date: Feb 2010
Hope things improve for you Nick

my trial nurse said it's fine to use lomotil or imodium too aslong as she knows about it

I found by having two tablets in the morning calms me quite a bit drasticky reducing the number of bm's
also if I do this 3 days in a row then stop the 4th day is same an 5th day starts ramping back up
this is something she said was noticed in some uc cases too
maybe u can ask about using it

don't need heaps of it and it may jus be enough to slow things up enough for the drug to Do it's work
also are you still on any othr drugs?
I'm stil on all mine ATM they won't taper me off til they see vast improvement
but they believe that with my current meds and this new drug that I should get the best benifet
but I only just scrapped into this trial as originally they thought I may be to bad to go on it an need surgery instead
as you need a score around 240 I think and mine was over 500
so they said I may take longer to recover etc as alot to repair/fix etc
could be the same for you perhaps

I know the feeling about wanting to avoid surgery, I had a meeting with a surgeon yesterday about keeping my options open incase this doesn't work, an the news wasn't as good as I'd hoped
originally i was lookin at a colonoscopy if I was to hav surgery, bit now they say I'd hav to hav an illosomy instead as my large bowel and colon and rectum is that bad that they would need to remove the lot

even the surgeon said he hopes that this drug starts working an does it's job

best of luck to you nick and hope things are on the up n up
I'm hopin this drug is just what I need, stil early days for me but it looks promissing so far
03-24-2010, 11:22 AM   #40
theend2
Senior Member
 
Join Date: Mar 2010
Is this drug Vedolizumab MLN0002 being test specifically for Ulcerative Colitis or Just for Crohns or for both? Reason I ask is because seems that Cimzia is only been tested for Crohns and only approved based on those crohns tests this is why I was denied insurance coverage on getting this drug.
03-24-2010, 11:56 AM   #41
Rob
Senior Member
 
Join Date: Feb 2010
Hi the end

from what I've read and have been told this drug was originally tested on uc, and after showing good results it was trialled on cd and has started showing results too

it's still in early days of testing tho

it's not available to the public as such ATM as it's only in trial stage ATM
so ud hav to qualify to meet there requirements etc before getting onto the trial, but once you do the drug is free, which is handy as I heard it's something like $10grand a dose (ouch)
03-24-2010, 12:09 PM   #42
theend2
Senior Member
 
Join Date: Mar 2010
Thanks Rob for the reply.
03-24-2010, 12:45 PM   #43
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Cheers Rob!

I think you're in a lot worse place than me at the moment. I had severe symptoms up to 24 months ago including fistulae but the steroids brought that back to moderate. Just gotta get off the steroids!

Hang in there, buddy. I'm sure that you'll get some relief from Vedo!
03-25-2010, 07:02 AM   #44
oregon
 
Join Date: Jan 2010
Location: London, United Kingdom
Hello everyone

Just thought i'd write a quick update on my experience on the trial (I have UC).

I had my 4th infusion this week, and things are going pretty well. I am down from 5 BMs to 2 BMs, with no bleeding. Which I am thrilled about. But - I still have major urgency issues. Got a BAD cold this week even though im super careful about avoiding places where I may pick one up from.

I also have the fatigue after the infusion, but not too bad. Im still the only one enrolled in the trial at my hospital (London).

Take care
__________________

Diagnosed July 2000
Pred 5mg
Azathioprine 125mg
Colazide 6.75g
MLN002
03-25-2010, 07:16 AM   #45
Rob
Senior Member
 
Join Date: Feb 2010
Fatigue?
As in you feel really tired after you hav the infusion or all the time?

After both my infussions (approx 5-6hrs) I felt really really buggered an slept like a log and the day after was lathargic

my second infusion- just on tues same again except wed I wasn't to bad, but today - thurs I was stuffed, I got up had a shower then went back to bed an slept another 6hrs the rest of day I was flat and now on strugglin keep my eyes open so off to bed early for me

see how I go tomorrow
04-06-2010, 07:09 AM   #46
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Hey Guys,

I've stopped my involvement with the Vedo trial. I had started to get worse and decided that I would take some Predfoam which took me out of the study.

In general I think I did get some relief initially from the drug but that after 3 infusions it was working for less time. And I was completely knackered when it did stop working with a big flare up of mouth ulcers.

I know that this drug will work for some - just like Humira and Infliximab which I have failed with - and not for others. I just wish everyone the best who tries it.

Nick
04-06-2010, 07:19 AM   #47
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
Hey Nj, so the trials could mean you are on it for sure or a placebo? I too failed at Remicade and Humira, and Cimzia isnt available here yet. My Gi isn't keen on putting me on Cimzia because he feels the biologics don't work for me, and may not. Frustrating when some are doing so well and others.... I am on Methotrexate and there is some improvement but still need a few more shots to really see if it will work this time around.

So what is up for YOU now?
04-06-2010, 07:22 AM   #48
oregon
 
Join Date: Jan 2010
Location: London, United Kingdom
Nick - Sorry to hear that the trial didnt work out for you. I hope something else comes along soon.

Best wishes
06-01-2010, 07:38 AM   #49
Rob
Senior Member
 
Join Date: Feb 2010
Just thought I'd bump this thread back up an give an update

I've now had 4 doses of this and continuing to improve
it's not like a sprint race but more like a marathon, if ya get my meaning

I stil hav my up an down days tho the down days aren't as frequent or as bad as before
I think the bad days could be due to me.... seems if in bad or lazy an eat somethin I know I shouldn't that I hav a bad fy the following day

but this also helps in a way cos if I hav something I shouldn't i put it in my trial diary I'm keeping and then I can see what happens etc
if I notice a bad day I don't eat it again or wait an level out an try again to see if was jus a coincidence or not

I've found that possibly garlic bread is one of these foods, which sux as I love it

on my last visit to the hospital for my dose they did a Blood test to see if I could begin to taper my pred
but I failed that as I've improved but not enough yet that I can start to taper
so guess it's gonna be a long journey an I'll jus hav to be patient

bm's are down and no longer as um loose as before an becoming more formed tmi I know sorry
I still get some pains n cramps but nowhere near as bad or regularly as before
an up until other day I'd been blood free for weeks
I'm putting the blood returning down to something I'd eaten - I hope
seems to hav gone again so we will see

also it's not as sore or tender down there now either an I can actually sit down on something that doesn't hav 2 feet of cushion on it lol
so I guess that means it's doin somethin as thts where my biggest prob was

so fingers crossed it keeps headin in this direction and after a few more doses il be well on the road to remission
06-01-2010, 08:21 AM   #50
Nyx
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Location: Barrie, Ontario

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Great news Rob!! I was wondering how you were doing with the trial. I hope you continue to improve
__________________
Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

06-01-2010, 08:47 AM   #51
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
Hey Rob, glad it is working for ya! I too am in the same boat having good days and bad, and the though of remission is what keeps me positive. Just had my 11th shot of Metho and still having flares. I envy those whose can eat anything and go anywhere at anytime. I am getting there, hope a full remission is in for both of us!
06-01-2010, 10:49 AM   #52
glum chump
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Location: British Columbia

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Hello:

I've only recently joined this forum and saw this thread so thought I'd add my two cents!

I also started this study and have received three infusions. At my last infusion, I was placed in the "non-respondent" category as there was no detectable difference in my health status (12-15 bm's a day).

I'm strongly considering withdrawing from the study although I feel I should stick it out for at least one more, given some people have noticed an improvement after their fourth and fifth infusion. However, I've been getting incredibly vivid dreams, all of which are fairly negative/nihilistic. The dreams are really "active" and cause anxiety when I wake from them. I also am having a hard time controlling my thoughts and finding it kind of scary.

I haven't noticed that anyone else has these side effects from the Crohn's trials, but the nurse felt that the side effects I'm experiencing might be due to the fact that I also have MS.

Anyways, just thought I'd share my experience...and I'm pretty sure I'll not go for my next infusion which is scheduled for June 18th.
06-01-2010, 02:59 PM   #53
Rob
Senior Member
 
Join Date: Feb 2010
Sorry to hear that glum, hope everything calms down an works out for you

being a trial they don't know the full out come of what the drug will do with people etc which is why they need volunteers such as yourself an me etc to trial the drugs an see what happens
unfortunatly not all drugs are going to agree with all people, bit like how some ppl are allergic to penacilan etc

hopefully if you pull out from the trial your problems stop

good luck
06-02-2010, 12:30 PM   #54
glum chump
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Hi Rob:

Thanks for your kind words/encouragement. I'm really glad to hear the drug is working for you. I had been hopeful that the drug would work---when I first started, the nurse had mentioned that the one other person taking it was feeling really good, and I had plans/dreams to also be a poster child for these meds (especially given the price of the drug when it came on the market, as you mentioned earlier!).

If it weren't for the fact that I can't seem to control these nihilistic thoughts/ideations, I would continue with the drugs. At this point, I'm more scared of myself and where these thoughts will lead me in the middle of the night, so I think I will give it a miss.

I wish you the very best success with this drug!
06-09-2010, 04:43 PM   #55
crohns_gleek
New Member
 
Join Date: Jun 2010
Hello:

I've only recently joined this forum and saw this thread so thought I'd add my two cents!

I also started this study and have received three infusions. At my last infusion, I was placed in the "non-respondent" category as there was no detectable difference in my health status (12-15 bm's a day).

I'm strongly considering withdrawing from the study although I feel I should stick it out for at least one more, given some people have noticed an improvement after their fourth and fifth infusion. However, I've been getting incredibly vivid dreams, all of which are fairly negative/nihilistic. The dreams are really "active" and cause anxiety when I wake from them. I also am having a hard time controlling my thoughts and finding it kind of scary.

I haven't noticed that anyone else has these side effects from the Crohn's trials, but the nurse felt that the side effects I'm experiencing might be due to the fact that I also have MS.

Anyways, just thought I'd share my experience...and I'm pretty sure I'll not go for my next infusion which is scheduled for June 18th.
Hi glum_chump, I am also in the trial and having the same problems with you as far as very intense/vivid dreams and irrational thoughts. I have told the person running my trial of these problems but so far no one has really helped or thought for these to be associated with the drug although they started after I started the trial (in december). It makes me feel so much better to see that someone else has had these side effects since I was beginning to think I was going crazy, I was considering withdrawl but I thought the issues may just be related to me so I didn't want to. Now that you have also brought up this issue I may consider withdrawing because like you, its getting scary and these thoughts are starting to affect my quality of life.
06-18-2010, 11:31 AM   #56
glum chump
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Hi Crohns gleek:

I'm really sorry to hear that you've have these same effects, and at the same time, like you, I'm relieved that there's another person who has experienced the same kinds of issues.

I told the folks at the research centre about the issues I was facing (I sent them an email detailing the effects rather than talking to them so that there would be some kind of written paper trail...having been on several drug trials, I find that study folks are much quicker to either minimize or dismiss my verbal feedback).

The nurse and the research GI met with me and felt that, given the timing of these effects, it would most likely be caused by the drug and agreed I should come off of them. I was to get my next infusion today. I was told that they would be writing this up as a "Significant Event" and send it through to the study monitors.

Yes, these symptoms were quite scary and at first, I thought I was going crazy. And then I realized that if I don't stop these drugs, I might actually get diagnosed with some form of mental illness (just based on the symptoms). And I really don't need yet another diagnosis!

If you'd like me to send the note I sent to the researcher's, I can send it to you off-forum, or if you'd like to chat more, then I'm happy to do that as well. And you're welcome to use me as an example---my research study people kept saying, "We've had no other reports of anyone else experiencing these symptoms."

Cheers
06-18-2010, 12:23 PM   #57
Rob
Senior Member
 
Join Date: Feb 2010
Hey guys sorry to hear that you've had such bad luck with the trial
hope things improve for yas soon

I've just had my 5th infussion this week and things are goin well for me so far
it's a slow proccess but I'm happy if it keeps improving

yea still hav up n down days but nowhere near as many down days as I used to
so I'm crossin my fingers an hopin every infussion is a step closer to a normal life again like b4 my current flare
06-18-2010, 01:06 PM   #58
glum chump
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Hey Rob:

I will cross my fingers for you as well! I'm so happy to hear that the trial is offering you some relief and some cause for excitement/anticipation.

From what I've heard about others' experience, it does seem that Vedolizumab works itself gradually...here's looking at more 'up' days for you.
06-20-2010, 10:29 AM   #59
JAJ
New Member
 
Join Date: Jun 2010
New to forum......Very glad to find you all....
I have been a part of the study trial now for awhile, in Seattle Wa., and have developed a rash on my face....
Wondered if anyone else has experienced this ???
On healingwell.com forum I read where one gal had to quit study because of rash on face, diagnosed as Rosacea, caused by the drug.....

Jeff
06-20-2010, 10:39 AM   #60
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
Welcome Jaj . Glad you found us here. I hope that you would join us by telling us your journey on a YOUR STORY thread. Rashes are very common with Crohns and UC. Please introduce yourself so we can all welcome you and learn from you too.
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