HealingWell
Search Close Search
☰

Vedolizumab effectively treats ulcerative colitis and Crohns

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/17/2013 8:26 PM (GMT 0)
Basically, severe IBD is a nightmare for those who can't get into remission. And all the spin in the world doesn't cover that these drugs don't get a lot of people into remission or, if they do, only a temporary or partial one.

And every so often, like right now, this genuinely enrages me.
Posted 10/17/2013 9:41 PM (GMT 0)

NiceCupOfTea said...
Why would this work where Remicade and Humira failed to work, and I don't mean initially worked and then stopped working, I mean never worked?

It has a different mechanism of action. If your IBD is not driven by TNFalpha, a TNF inhibitor is not going to work for you.


Therapies that target leucocyte trafficking (anti-integrins) have also been developed and are associated with good clinical response in CD. Natalizumab (anti-α4 integrin antibody) is associated with important side effects and is not used anymore in gastroenterology in Europe but is still used in the USA. Vedolizumab (MLN0002), an anti-α4β7 integrin antibody, has a good efficacy and safety profile. Monoclonal antibodies targeting other cytokines are also under development. For example, ustekinumab (CNTO 1275) inhibits interleukins 12 and 23. It is associated with a good clinical response in CD.
Posted 10/17/2013 10:47 PM (GMT 0)
Nicecupoftea I see you're in the UK like us. Just interested to hear you say that nothing has really worked for you so just wondered what you take now or have you had surgery? Just interested.
Posted 10/18/2013 12:32 AM (GMT 0)
@Tornado6 - Thanks for a good answer. My GI did mention a couple of drugs beyond the biologics (thalidomide being one of them, can't remember the others), but he seemed to think Remicade was the best med there was for Crohn's and that nothing else was likely to be effective for me. He said this quite clearly.

Maybe I should have tried an anti-integrin med - the list of things I am thinking I should've tried before surgery is growing longer and longer :/

@franny19 - How did you know I was from the UK? My name can't have given it away, surely... <_<.

Anyway, yeah, I have already had surgery: had a subtotal colectomy with ileostomy in February this year. In the year or so prior to surgery, I tried Remicade (for a year, including doubling the dose for a while); methotrexate; two types of liquid diet; and Humira. Oh yeah, and Prednisolone. Lots and lots of Pred. That was literally the only drug I responded positively to, but it never lasted; every time I got off the Pred, I'd flare up, end up back in hospital and on steroids... again.

I haven't been on any meds since surgery, but I'm seeing my GI fairly soon. If my CRP or faecal calprotectin is raised, then I'm gonna ask to go on 6MP or azathioprine. If there is any sign of inflammation, then it seems better to tackle it while it's still mild; exactly what wasn't done when I was diagnosed (back in 2000).

I see from your sig you had adacolumn therapy. How well did that work?? My GI actually mentioned that as a possible treatment after Remicade, but I never had it.
Posted 10/18/2013 6:48 AM (GMT 0)
Hi nicecupoftea thanks for that. I clicked on your name and it said England as where you come from! My son is 21 and it's him I am writing about. The adacolumn helped him but only lasted 6 months so now trying to get another 5 sessions but it involves a lot of travel if we do. Are you having pouch surgery? We are under St Marks in London but live on the coast. He's just had another round of pred - he has a colonoscopy in November and we will know more then. Good to chat!
Posted 10/18/2013 7:14 AM (GMT 0)
Oh, right. I didn't think about my profile >_>.

That's unfortunate the Adacolumn treatment only lasted 6 months; I heard it was meant to last up to a year.

Can't have pouch surgery, as I had Crohn's in the terminal ileum as well as the whole colon; the surgeon wouldn't even consider it. I still might be able to have my ileum connected to my rectum, but that depends on the rectum and ileum being disease-free. The Crohn's tends to come back anyway, so it's rarely a permanent solution.

St. Mark's was my first hospital, but only because I used to live in Harrow and it was naturally my local hospital anyway. They're probably great for j-pouch surgery, but for treatment of routine IBD... no, not really. They basically threw mesalazine meds at me for 5 years without caring that I couldn't actually tolerate mesalazine. During that time my Crohn's must have silently got much worse. Long story short, went to two more hospitals over 6 more years and they were both useless too. Only my current hospital has been any good; but it was too late by then.

Good luck with your son's colonoscopy.
Posted 7/29/2014 6:46 AM (GMT 0)
I have had CD for 20 years and used Remicade in 1998. I developed an allergic reaction to it. I went on Humira next which didn't do much for me. I ended up developing monoclonal gammopathy at the end of Remicade prior to Humira, which is a precursor to multiple myloma. I spent 18 months with a hematologist having blood tests to figure out if I would go on to develop the cancer, thankfully I didn't. However, in 2007 I did get Lupus SLE and went off biological meds completely. I have had two resections and have developed some heart issues from the lupus. I have decided the side effects of the biological meds (for me) are too of a much risk to take. As we remember the TB wasn't originally a side effect that was well known when they fast tracked Remicade. Developing lupus in between Remicade and Humira I have no proof to believe that those lupus like symptoms causesd my permanent SLE onset but to me until all of the biological drugs sort out the side effects they are too high of a risk personally. I do take medications but much safer ones and high doses of vitamins along with antivirals to try and just put out the fires. It's an individual choice but lymphona is a heavy price to pay for me. I already have left ventrical dystolic dysfunction and until the kinks can be worked out for the side effects. I'm living with my 4 narrowing strictures and watching my diet to ensure I don't get a blockage. This drug talked about it using murine protein and Both doc and I believe a higher risk of an allergic reaction may develop in my situation especially when the proteins are chimeric or murine versus human. Food for thought. If you find relief and quality of life who am I to say that it isn't a good thing for the patient , just not this patient just yet. Best of luck to all.
Posted 7/30/2014 5:37 AM (GMT 0)
Gelliebeans I'd like to know more about the doctors' anticipating allergic reaction to those different proteins. Do you know where to find that info?

I've been recovering from lupus like symptoms from remicade. They are now calling it ATIL as opposed to DIL, where anti TNFs are causing much much more severe symptoms than regular drug induced lupus. I have read about a dozen medical articles on it dating back to 2006, with many cases of ATIL resolving after up to a year or more. Very sorry to hear yours hasn't abated after stopping the TNFs and becoming long term SLE.

I'm considering Vedolizumab next but dread the prospect of going through this debilitating pain again!
Posted 7/30/2014 6:03 AM (GMT 0)
@contentprof - Whatever issues you had with Remicade, there should be no correlation with potential issues with Vedo. They act by two completely different mechanisms, at two different sites, etc. Its like comparing apples and oranges.
✚ New Topic ✚ Reply
12