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02-04-2010, 10:13 AM   #1
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Vedolizumab Trial

Hey Everyone,

I just started the Vedolizumab trial yesterday.

I got my first infusion and other than losing a bit of sleep last night I haven't noticed too much in the way of side effects.

I'll keep you up to date with my progression on this thread. I know we all want to hear some good news. Also, if you're on Vedo, I'd love to hear how you're doing.

Thanks,

Nick
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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
02-04-2010, 12:42 PM   #2
Rob
Senior Member
 
Join Date: Feb 2010
Hi Nick

just read ya post an noticed pretty much same as myself,
my crohns has affected me in same area as yourself

I'm sittin in hospital right as we speak attempting too sort it out

I've been trying immuran 200mg a day , mesalazine (salafalk) 1500 mg orally an 4g enima a day , and 50 mg predniscone daily along with multi vitamins etc etc. Also was on remicade trial but that proved fruitless ( infact I'd feel worse than ever for about 4-5 days after the infussion so we stopped that

so now in here at hospital they've stopped my predniscone an put my on hydraquaterzone ( how ever it spelt) injections 4 times a day an anti biotic and a blood thinning injection too avoid clotting
slowly slowly I've been getting better (been here a week now) but can't stay on these meds as gotta stay on hospital too recieve them

so my specialist has done all the tests an given me the choice
surgery with a bag, usteki drug trial , or this one mln0002

decission time in bout 8hrs

so at this point. I'm looking at joining you on the trial
love too hear how you goin along with it over next few days/ weeks etc

Rob
02-04-2010, 02:52 PM   #3
Sue-2009
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Join Date: Nov 2009
Location: Michigan
Hate to sound silly, but where can I find the info on this Vedo...What is PLm?
02-04-2010, 02:57 PM   #4
Rob
Senior Member
 
Join Date: Feb 2010
I googled it sue
plus my drs gave me some paper work too read
I'll try typin some info up in a min once they put the room lights on
02-05-2010, 05:20 AM   #5
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Hey Rob,

Sounds like you're not in a great place at the moment. I really hope you feel well soon.

The Vedo is definitely worth trying but it might take a couple of weeks to get on it.

As ever with these things, it is very difficult to work out how successful it has been up to now. Hopefully, we might get some anecdotal evidence support of it here on this forum.

I hope you feel better soon... Good Luck!

Nick
02-05-2010, 06:06 AM   #6
Rob
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Join Date: Feb 2010
Cheers mate

be good too hear some information about this drug

hope it works for you
02-16-2010, 08:21 AM   #7
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Hi,

Just thought I'd give you an update on how I am feeling on the Vedolimuzab.

I got my first infusion 13 days ago - I am in again tomorrow for no. 2.

I had no allergic reactions to the initial infusion.

For the first week I was pretty exhausted. I also started to get what I would think of as constipated. The second week I am feeling much brighter... there was definitely major changes going on in my body that first week.

So, now for the good news. I think this stuff might be working. In the ten days up to the infusion I had 3 days of 18-20 bm's. The worst day so far on vedo was a week ago with 5 bm's. (I'm having to count for the trial. I'm not that obsessed!)

I have felt pretty constipated throughout - and as a result have had a lot of mouth ulcers - so I haven't always felt great but this is gonna take a while. And I think that that is a positive start.

I'm really looking forward to seeing how I get on in the next couple of weeks. I'll be in better condition going in tomorrow for my second infusion so we'll see!

Nick
02-16-2010, 08:34 AM   #8
My Butt Hurts
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That is HUGE! From 18 BMs down to 5?? That's a good sign!
Thank you from all of us for doing a trial. We all may need it in the future.
Hope you feel better and better each day!
02-16-2010, 09:18 AM   #9
Peaches
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That's *incredible* Nick! Sounds very promising. Can you talk to your doc and get something for the mouth ulcers? I know those can be no fun. Thanks for the update - keep 'em coming!!
02-16-2010, 01:02 PM   #10
imisspopcorn
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Nick, I hope you continue to see positive results.....Yeah!
02-19-2010, 05:24 AM   #11
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Hey everyone,

Just going to temper the optimism of my last post a little bit. I've had a couple of bad days in between ... 20 bm's followed by 10 bm's.

Not great really but I had been feeling constipated and I suppose it had to break some time. The only positive is I hate that constipated feeling ... I instantly get lots of mouth ulcers and go off my food. I'm now back on my food and the mouth ulcers have receded a bit.

As for the Vedo... I'm now feeling a little bit more pessimistic for obvious reasons. I'll just have to see how I bear up over the weekend.

It's never plain sailing, is it?

Nick
02-19-2010, 05:47 AM   #12
Rob
Senior Member
 
Join Date: Feb 2010
Hey Nick thanks for the update

I'm seein the trial nurse this week about starting this myself
so hopefully 2-3 weeks time I'll be testing it out
readin ya signiture i see ur crohns is pretty much same as where mine is

I'm hopin this drug will work for me as my specialist says there's not many more options left apart from surgery
02-19-2010, 06:12 AM   #13
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Hey Rob,

Fingers crossed the you get on the Vedo and it works for you. I've tried Humira which had no effect really whereas Vedo has been up and down but it has definitely had an effect. I just have to wait and see.

Have you tried any foam pred enemas (Predfoam here in Ireland) considering the location of your disease? They worked for me over a 3 year period but I had 5 out of 7 years on steroids which I now have to get off. Hence the vedo trial.

Fingers crossed anyway!

Nick
02-19-2010, 09:22 AM   #14
Rob
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Join Date: Feb 2010
I tried mesalazine enimas but they didn't provide much relief
the best thing I found was when in hospital I recieved hydrocortisone injections
which stablised my cd an helped repair some damage, enuff too make life bit more bareable an stopped most of the bleeding

I've been on and off pred for the last 4 yrs for occasional flare ups but I've been on it now for the past 6 months with my current - worst flare

I tried remicade myself but didn't do anything infact I felt worse after my infussions so I stopped after the third one

with the vedolizumab I'll be on an open label trial so I know I'll get the drug for atleast the first 6-8 weeks after that it will go into a placebo trial where I may get it or I may not
stil 6 weeks od getting it is better than none
so fingers crossed the trial nurse agrees it's a good idea
02-19-2010, 09:27 AM   #15
Peaches
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Sorry to hear the Vedo is rocky for you Nick - I hope you will start getting more relief buddy!

Rob- good luck! It will be interesting to see how the open label part goes for you!
02-19-2010, 09:30 AM   #16
Rob
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Join Date: Feb 2010
Cheers peaches

fingers crossed I get accepted
02-22-2010, 07:36 AM   #17
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Hey there,

Just thought I would give you an update after my flare last week.

I was pretty constipated when I started the Vedo and then spectacularly not! 35 trips to the toilet over a 36 hour period.

I have definitely levelled out now and I'm feeling generally well. The drug is definitely having an effect. I've decided to take lactulose when I feel constipation coming on to avoid last week's flare.

It feels weird taking a laxative with Crohn's but hey, whatever gets you through.

Hope you're doing well, Rob - I took those mesalazine enemas lots over the years - I found them very limited. Whereas the Predfoam enemas gave me a lot of relief... and the good thing about them is that they are not nearly as harmful as taking steroids orally. Might be worth asking about but I suspect your doctor would have suggested them if they were appropriate. A little bit more positive on the Vedo this time so I hope you get on. I'm at the same trial stage as you, the first two shots were open label followed by being randomized into a placebo and two possible doses.

Cheers,

Nick
02-23-2010, 01:27 PM   #18
Sue-2009
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Join Date: Nov 2009
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Good news for you!!! I keep lurking around to see how you are doing. I am glad you are welll. It is always good to hear some good news...Sue
02-23-2010, 02:29 PM   #19
Rob
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Join Date: Feb 2010
Well got my first meetin with trial nurse in about 4?hours
can't wait
got some blood tests, ECG an possibly somethin else

hopin goes well
02-23-2010, 02:40 PM   #20
farm
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Thanks for the update Nic, I hope you continue to do well.
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02-23-2010, 02:43 PM   #21
imisspopcorn
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That is awesome news Nick!
02-26-2010, 08:06 AM   #22
ThatGuy2006
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Location: Charleston, South Carolina
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
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02-26-2010, 09:38 AM   #23
Rob
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Join Date: Feb 2010
Good luck with the trial an keep us posted

I've started my phone diary but hav a week b4 I can get my first infusion
done my blood tests, ECG, chest exray and pysical
jus waitin on he blood test results

so fingers crossed I'll be able to report back here with news soon
03-01-2010, 10:32 AM   #24
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
ThatGuy2006 said:
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'll keep you guys up to date
Hey there... I felt tired as well after both doses so I think it maybe a reaction of some sort. There's gonna be something happening anyway!

I'm 2 weeks into my second dose. I feel o.k... A little bit constipated again which I don't enjoy because it always ends badly! I still think I am getting some relief but the drug is not a 'silver bullet' for me.

That said, I am off the Predfoam for the first time in 3 years and keeping it together so maybe I should get some perspective!
03-01-2010, 02:40 PM   #25
Sue-2009
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Join Date: Nov 2009
Location: Michigan
I hope it starts working....Let us know Sue
03-10-2010, 06:44 AM   #26
Rob
Senior Member
 
Join Date: Feb 2010
Well I had my first dose of vedolizumab yesterday
still early days yet but hopefully it goes well

I did get my first decent nights (unbroken) sleep for ages 8hrs worth

keep you all posted
03-10-2010, 07:59 AM   #27
Crohn's 35
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Join Date: Oct 2009
Fingers crossed for you Rob...so do you feel like a guinea pig??? I too didnt do well on the other Biologics, so hopefully this one will be THE one. Just hope by the time it gets approved by the FDA here in Canada I wont be too bad off. Glad you finally got some sleep. No one has no idea how much sleep is needed to heal... keep going. Hope you get relief soon!
03-10-2010, 08:08 AM   #28
Rob
Senior Member
 
Join Date: Feb 2010
Thanks Pen
hopefully you can find something that works for you soon

yea sleep is very important with this disease and unfortunatly it's something we seem too lack

lol i do feel a bit like a guinee pig, but at same time I'm excited lol
03-12-2010, 06:36 AM   #29
oregon
 
Join Date: Jan 2010
Location: London, United Kingdom
Hello everyone

I was wondering how everyone on the trial is doing?

I will be having my 4th infusion on 22 March. I have noticed some improvement, my last scope showed mild inflammation (it was moderate at week 0).

So, not in remission but it does look better.

Take care
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03-12-2010, 09:10 AM   #30
njprrogers
 
Join Date: Dec 2009
Location: Dublin, Ireland
Rob: Welcome to the gang! Fantastic to hear that you got on board. I really hope it works out for you.

Personally, I am doing well at the moment. Going for my third infusion next wednesday - it could be one of three : my current dose, a lower dose or a placebo.

I'm off the 'roids for the first time in 3 years and I'm now stable. I had a very good week last week and a little flare this week. It wasn't too dramatic and I'm feeling a little better than I was Monday.

All in all, I'm pretty upbeat at the moment about the way it is going.

Oregon - sounds like you're getting similar benefits. It's a slow mover I think. We just have to hang on in. It'd be lovely if after 6 months the trend of improvement continued!
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