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


 
10-19-2009, 11:51 PM   #31
imisspopcorn
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Welcome Hazel,

Let us know how things go.
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Instead of hiding in the darkness of a grey cloud, why not look for the silver lining?
10-21-2009, 08:31 PM   #32
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and good luck, Hazel!

Let us know how everything progresses
11-11-2009, 02:14 PM   #33
Ezio
 
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good luck,
maybe i try vedolizumab in december...
12-12-2009, 05:29 PM   #34
Ezio
 
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monday colonscopy...

and tuesday my first infusion of vedolizumab or placebo!!
12-12-2009, 05:55 PM   #35
imisspopcorn
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Good luck Ezio....Keep us posted
12-14-2009, 08:33 AM   #36
Peaches
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Good luck buddy - let us know how you are doing with it and *thank you* for doing a clinic trial - we all need more people like you doing those tests for us to get new medications!
12-26-2009, 02:45 PM   #37
Ezio
 
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Hi after 12 days of my first infusion.....no improvement...
12-26-2009, 03:07 PM   #38
Peaches
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Well - fingers STILL crossed!!! Did they indicate how long it might take to see a response?
12-26-2009, 03:18 PM   #39
Ezio
 
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i suppose 6 weeks...after two infusion
12-26-2009, 03:21 PM   #40
Peaches
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Well....hang in there - hopefully you'll start seeing some results soon! How long does your trial go on for do you know?
12-26-2009, 03:29 PM   #41
Ezio
 
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46 weeks
01-14-2010, 09:57 AM   #42
njprrogers
 
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Ezio said:
46 weeks
Hi Ezio,

I'm due to start Vedo in the next three weeks. What have your experiences been so far?

Is anyone doing well on the drug?
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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
01-14-2010, 05:51 PM   #43
Ezio
 
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Hi!!

in my hospital there are 10 patients on these drugs. ..I'm in touch with 2 of them and they are getting better! nobody is getting worse
01-15-2010, 02:28 PM   #44
oregon
 
Hi

I am new here. I have UC (10 years) and have just had my first MLN002 infusion this past Monday as part of the trial. I am in England.

I haven't noticed any improvement, nor any side effects. Though, I do notice the odd time during the day when I suddenly get really fatigued and a bit brain foggy....

I am hoping I am not on the placebo! I am the only one on the trial at my hospital, so its great that I have found you guys! So, we can discuss our experiences!

I have my 2nd infusion in 2 weeks, then another flex sig at week 6.

Take care

Steve
01-15-2010, 04:08 PM   #45
Ezio
 
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hi steve!

good luck!!
01-18-2010, 11:59 AM   #46
njprrogers
 
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Hey there Steve,

I'm in Dublin... I'm going in for my initial screening for the trial on Wednesday. I've been told that there is no placebo being used by the hospital. There will be two doses and I will not know which one I am on...

I'll keep you posted with any news! Apparently, the drug has to build up in the system first hence the 3 * 2 week doses followed by monthly doses so it might take a few weeks to notice a substantive change in symptoms.

Fingers crossed everyone and I hope you start feeling a bit better soon, Steve.

Nick



oregon said:
Hi

I am new here. I have UC (10 years) and have just had my first MLN002 infusion this past Monday as part of the trial. I am in England.

I haven't noticed any improvement, nor any side effects. Though, I do notice the odd time during the day when I suddenly get really fatigued and a bit brain foggy....

I am hoping I am not on the placebo! I am the only one on the trial at my hospital, so its great that I have found you guys! So, we can discuss our experiences!

I have my 2nd infusion in 2 weeks, then another flex sig at week 6.

Take care

Steve
01-27-2010, 07:43 AM   #47
oregon
 
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Hi Nick

Hope all is well.

Did you have your screening? How did it go? Good I hope!

Wow, lucky you at a hospital with no placebo! Wish I had that, lol. However, I am 99.9% sure I am on the real drug.

I have just had my 2nd infusion this week. So, thats the introduction phase over with. I have my flex sig arranged for Week 6, which is when I will be re-assigned. I really hope I stay on the drug!

I have noticed a small improvement in symptoms. Fewer BMs, less bleeding. Though still have urgency.

I used to be in Dublin all the time! Have friends living there.

Good luck, and keep us informed!

Steve
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MLN002
02-03-2010, 04:42 AM   #48
Rob
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Hi I'm currently in hospital due too a bad flare of cd
I was diagnosed about 5years ago and was travelling along not too bad considering up until 5 months ago since then nothing has been able too slow or control it

I've been on immuran 200mg. Mesalazine 1500mg. Fish oil tablets. Multi vitamins. Predniscilone 50mg and 4g mesalazine enima

currently in hospital I'm recieving hydeoquatazone injections and a anti blood clotting injection. Plus a antibiotic and a vitamin d plus calcium tablet

I eat more pills than food lol

I went on remicade reccently but absolutly no change

so now my specialist is suggesting a trial of two new drugs

vedolizumab mln0002. An the other is ustekinumab

now the vedo is an open label trial so no placebo I'll get the actual drug
where the ustek is a placebo trial so no gaurentee I'll get the drug

I'm not sure which way too go spec seein I hav limited info

so I'm Layin in bed searchin up the drugs on my iPhone (how I found this forum)
(please excuse the spelling as the iPhone bit clumsy Or me lol)

so any help guiding me would be appreciated

Rob
02-03-2010, 08:33 AM   #49
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Hi Rob and welcome!!!!! It would be best if you put your story on a MY story thread so everyone here can greet you! There is so much information here, and we have a laugh or two , goodness knows we have enough bad days as you are having. I really hope you get some relief soon... hope you are getting the real stuff!

Hope you stick around, and join us!
02-03-2010, 08:37 AM   #50
Rob
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Cheers. Havnt figured out how too post a thread yet
possibly cos I'm not on a computer ???
02-03-2010, 08:42 AM   #51
Crohn's 35
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Some one help this poor guy.. but I will try. Go to the original board where it has categories and click on MY Story and then click on Threads and put your story on here... I am a not computer techie either but hope this helps....
02-03-2010, 10:01 AM   #52
Peaches
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Hey Rob - we'd love to get your full story - but since you are having to "thumb" it with an iPhone (thank goodness you at least have that!!) - you are fine with what you have written here.

I have never been a part of a clinical trial before and I guess it would depend on how severe my disease was. My inclination would be to go on the trial where I *knew* I was getting the actual drug so that I would have a good chance of getting a response and quieting my disease down as quickly as possible. But - participating in blind trials are very important as well.....so...I guess it is still a personal choice eh?

We have threads for both of those drugs - would you please keep us posted on what you decide to do and how you respond to them? It would be very helpful to users of this forum. Good luck to you and I hope you start feeling better soon!
02-03-2010, 04:00 PM   #53
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Hi all!!

last week I had colonscopy after 6 week of vedolizumab

I had a moderate colitis, but now it's become slightly!!

Now i go to the bathroom less frequently

next infusion: 24 feb
02-03-2010, 04:02 PM   #54
imisspopcorn
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Woo Hooo!!! How is the fatigue?
02-03-2010, 04:16 PM   #55
Rob
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How goes the treatment Ezio?

My drs offering this drug to me but jus don't hav much info on it
the possible side effects is another worry
that plm or pml what ever it is

if I decide too go for this drug trial I'll be garaunteed 100% too recieve it

I just need too decide if I want too try it or go the operation route or try a diff drug trial that possibly won't get me the drug jus a placebo
02-03-2010, 04:49 PM   #56
saidinstouch
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This drug in _theory_ has a reduced chance of causing PML because it targets a protein more specific to the digestive system. Tysabri targets the same protein, but also is less specific and targets other proteins believed to be important in the brain. The idea is that we know Tysabri works, so if we more specifically target the protein that treats crohns disease while not (or minimally) targetting the protein that is involved in PML, we can create a drug with the same benefits, but reduced risk of PML.

As for your concern of going into the placebo vs open trial, only you can decide that. Does the placebo trial have a period where they can unblind you after 8 or 12 weeks if you don't improve so you can get the drug if you were on placebo? If so that changes how I would respond. Right now your goal should be to save your colon (or at least mine would be if I were that bad) so you need to take the route you feel will allow you to do that OR to accomplish whatever your personal goals are.
02-03-2010, 05:11 PM   #57
Rob
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Do I take it your possibly a dr said?
02-03-2010, 05:17 PM   #58
Ezio
 
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imisspopcorn: yes a little bit!!!!

rob: except the last two days....very good!!!!!!
02-03-2010, 05:25 PM   #59
Rob
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So would you recomend this drug ???
02-03-2010, 05:27 PM   #60
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For my experience...yes..
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Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Vedolizumab AKA MLN002
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