HealingWell
Search Close Search
☰

Vedolizumab

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/30/2013 3:03 PM (GMT 0)

Getting to a stage where the side effects of Remicade are starting to take their toll.  Although the UC is under complete control, I am suffering from sinus, cold sore, eye and nose issues, my immune system has been shot to pieces.  My consultant fears that I could face major issues if I pick up a serious infection and the immune system cannot cope.

 

I visited a surgeon earlier this week to discuss options and I mentioned Vedolizumab (the drug undergoing trials [currently Phase 3] that targets the gut and leaves the immune system alone).  He advised that there are a lot of encouraging noises coming out of the medical arena regarding the drug and to hang on in there.   Despite immune system issues my UC is generally controlled by Remicade, so thankfully I am too well (relatively) to undergo surgery, so a lower dosage of Remicade may be the answer.

 

Let me make it clear, I don't want surgery, it frightens me.  When I was a kid, if you had a sore throat, they took your tonsils out - now they don't.  I hope it will be the same with UC.

 

There are great advances being made with regard to UC and a number of new drugs are expected to come to market within the next two or three years...one note of caution, the surgeon did say, don't believe everything that you read on the forums, there is a lot of money involved with bringing a drug to market, and some companies exagerate the benefits.  

Posted 1/30/2013 4:35 PM (GMT 0)
I have seen a handful of people on this site that have used Vedolizumab but it is a new medication and that scares me a little bit. Surgery also scares me but at least we are pretty confident of the long-term complications with surgery. It's great if you are able to try Vedolizumab and your immune system improves and your UC stays in check - you should just be aware that there are potential issues with all of these new medications. I take 6mp and that scares me as well but unfortunately we have to make these decisions with this illness. Keep me updated on how you do.
Posted 1/30/2013 4:44 PM (GMT 0)
You are on a sky high dose of Remicade. Have you gone up gradually over the years to maintain remission? Or do you think you might be able to cut back without flaring?

I will say... there is no such thing as "too well" for surgery. There are situations where surgery probably isn't warranted (e.g. mild UC well managed with 5ASAs), but just because you feel well or aren't flaring doesn't rule it out. Ultimately you have to pick the road with the risk profile that you're most comfortable with.
Posted 1/30/2013 4:46 PM (GMT 0)
Thanks for the reply - I will, I think (hope) we are entering a new era with regard to the treatment of this horrible disease. But I agree there are bound to be side effects somewhere along the line.
My body generally reacts to medicine very quickly (for better or for worse). Like so many I am simply hoping for a cure without the need for surgery. If that means I have to bide my time and go back to Prednisolone if I flare again then so be it.
Posted 1/30/2013 5:14 PM (GMT 0)
Are you 100%, UC wise? If so I would try reducing the Remicade to a lower dose and see what happens. I asked my doctor about Vedolizumab recently. I'm not doing badly but he immediately blew it off, saying I am nowhere near in bad enough shape to consider biologics. I don't know how much he knows about it but all of the studies I have read suggest it is actually quite safe and is being considered as a first line drug when it comes out.
Posted 1/30/2013 5:34 PM (GMT 0)
It is still a monoclonal antibody. Your body will eventually build up a resistance to it. So, it should be used sparingly, but it is definately something to look forward to.
Posted 1/31/2013 3:33 PM (GMT 0)
Thanks all for your responses, I will ask to reduce the Remicade to 15mg per kilo. I was on 10mg previously every 2 months but started to flare after about 6/7 weeks. I then started to have the infusions every 6 weeks but started to flare after 5 and so on. So went up to current doseage where I have no UC symptoms but look like I've got the plague...;-)
Posted 3/8/2013 5:23 PM (GMT 0)
"Takeda Submits Marketing Authorisation Application for Vedolizumab in Moderately to Severely Active Ulcerative Colitis and Crohn's Disease in the European Union"

www.prnewswire.co.uk/news-releases/takeda-submits-marketing-authorisation-application-for-vedolizumab-in-moderately-to-severely-active-ulcerative-colitis-and-crohns-disease-in-the-european-union-196263891.html
Posted 3/8/2013 6:16 PM (GMT 0)
Wow 20Mg per kg Remicade dose......someone approved that..whoaaa....thats some serious dosage.
Posted 3/8/2013 10:33 PM (GMT 0)

lemonhead said...
It is still a monoclonal antibody. Your body will eventually build up a resistance to it. So, it should be used sparingly, but it is definately something to look forward to.

I had not thought of this. I was just hearing the "less side effects". I guess it could be taken with a low-dose immuno suppressant to delay resistance.

Of course, I would not need it to work forever, just until an even better treatment came along.
Posted 3/9/2013 12:25 AM (GMT 0)

London Lurker said...
"Takeda Submits Marketing Authorisation Application for Vedolizumab in Moderately to Severely Active Ulcerative Colitis and Crohn's Disease in the European Union"

www.prnewswire.co.uk/news-releases/takeda-submits-marketing-authorisation-application-for-vedolizumab-in-moderately-to-severely-active-ulcerative-colitis-and-crohns-disease-in-the-european-union-196263891.html

Looks like Europeans will get access to it first. Their approval process seems less cumbersome and expensive than FDA approval.
Posted 3/9/2013 2:31 AM (GMT 0)
I was on Vedolizumab open label, so I was getting the drug and it didn't work for me. Which was disappointing. I thought it might be the drug that would give my life back
Posted 3/9/2013 4:45 AM (GMT 0)
BTW, I believe vedolizumab has been around since the 1990's. In that sense it is not a "new" drug. It has just somehow slipped through the cracks and never made it on to the market. Sounds like the Europeans will be getting their hands on it soon.
✚ New Topic ✚ Reply