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skn69
Hi Guys,
I have been out of town for a wedding and obviously, I find the only person in the brides's family with UC.
I have spoken to her before about her flares and what possible meds and solutions are out there to help control things.
This is a woman from a wealthy family who has the means to see the top specialists and does...so I have a problem with it when she tells me that her doctors do not think that there is anything that can be done for UC and that surgery does not exist. (no one has ever spoken to her about a colectomy and j pouch creation)
But, they have told her about a new miracle drug for UC and Crohns that will be released here on the market in 2015 and is already approved.
It is an anti-rejection drug used for kidney transplants that was discovered to have an amazing, positive effect on UC.
I have added the link below...have any of you heard anything about it? Does anyone have any experience with it? Does it live up to the supposed reputation as a miracle drug?
Sharon

https://www.google.co.il/searc...qEU63xKOeA8QeQ6oG4Bg

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Jan DollarJan DollarModerator, RN, retired
I've heard of it. I don't see how it is any better or worse than the other offerings. Here in the U.S. It was not even approved as a primary treatment, but a secondary treatment after failing other anti-TNF drugs.

Basically, I just see it as another option, not a miracle. It was approved for UC and Crohn's by the FDA just last week.
http://www.fda.gov/newsevents/...ements/ucm398065.htm
This drug is another biologic that works on a similar pathway as Tysabri, which carries a conern for neurological damage. That is why is was approved only for second line treatment.
http://www.fool.com/investing/...ctive-2014-appr.aspx

Perhaps the woman you met at the wedding does not have disease to the point that colectomy is a acceptable treatment path at this point. Only about a third of UC patients ultimately need colectomy.

Jan Smiler
Jan Dollar
P PluotMember
Vedolizumab (trade name Entyvio in the US) targets integrin just like Tysabri (natalizumab), however it targets a variant of integrin that is gut-specific. Therefore, it's theorized that it doesn't carry the same neurological (PML) risks as Tysabri, and will have fewer side effects overall.

I know people who had it in trials and didn't have success, but those are people I know from talking about surgery so there's a bit of confirmation bias in the group Smiler
P
Jan DollarJan DollarModerator, RN, retired
Yeah, Liz, I am with you. Reports of people seeking surgery advice are probably at the short end of options and have already failed numerous treatments.

I hope that the gut specific pathway does make a difference, but I am with the FDA in regard to exercising some caution, and making it a second line treatment. At least until they have more long term data in.

Jan Smiler
Jan Dollar
skn69skn69Member
Thanks Ladies,
That is more of less what I expected to hear...I sort of warned her that miracles might happen in the Holy Land every day but I wasn't too sure that you could pray for remission and get a miracle drug.
I will warn her...being that she is soooo counting on this. And planned to be "cured" by this.
Her "big wig professor-doctors-surgeons" are selling her a bag of smoke as far as I am concerned...but she believes them.
I am scared to deceive or disillusion her but she is so hoping for this as she goes in and out of flares...the latest "cure" was being blessed here by a holy-man that seemed to throw her into remission. Which only makes her husband believe that her disease appear to be psychosomatic...which in turn makes things worse.
There is no such thing as a miracle, I guess>
Sharon
skn69
KarenchaseKarenchaseMember
I was in clinical trials with vedolizumab, I guess about 2 years ago now. I'm glad to see it's on the market now, I guess it means it worked for some significant number of people. I was one of those with very stubborn acute UC symptoms from the point of my diagnosis until the diseased organ had to come out. My GI at the time was very proactive with medical interventions, and got me into the trial as a last gasp effort to manage my disease medically. It didn't work for me, I think I was too far gone by that point. Maybe if the disease is less advanced when you go on it, it might be more effective? I'm not sure how they work. It is similar to Remicade though, same delivery method anyway (and Remicade's clinical name is Infliximab, another "mab" drug as I always thought of them). So, for those people who haven't resigned themselves to surgery, or who might have a mild to moderate case of UC, it might be a better option. Not for me, unfortunately.
Karenchase

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