ENTYVIO, Anyone?

I am 37 and was officially diagnosed with sever UC back in 2010 after years of misdiagnosed issues. I am yet again suffering through another flare up and my GI after a colonoscopy today is putting me back on Prednisone, ugh, and wants me to get on ENTYVIO. I have gone through the gammet of drugs, the last being Remicade at max dose and frequency, which I did have the best success with in comparison to others. I'm from Vancouver Canada and this drug was recently approved in Canada back in May. Can anyone tell me there experience with this drug, good or bad?

Hey Darrin, welcome to the forum. In case you haven't found it yet, we have an Entyvio forum located here that you may gain insight from.

I wish you all the best.

Hi, I hope you find some relief soon.
What happend to Remicade ? Did you develope anti-bodies ?

Regardin Entyvio, it is still early to say since as you said it's been on the
market for only few month now.

I eventually developed antibodies and combined with some side effects got off it and switched GI's. We decided to go to basics on Pentasa which was just a waste of time and couldn't go back to Remicade anyway. 5 days in on Prednisone now, not to pleasant, but seeing my GI next week and hopefully can start the Entyvio soon. Sounds promising but also seems as though results don't start to show until multiple infusions. It can honestly only get better because things are pretty awful right now.
Cheers,

I'm so sorry things are bad for you right now I hope you see improvement soon! Please keep us updated as to what the GI says.

I have recently started Entyvio it is the only thing left that I have not taken. I have been on prednisone for the last 22 years and usually unable to get below 10mg for any period of time. I did get temporary relief from Humira. I have had 4 injection and now am down to 4mg of prednisone and my symptoms seem to be steadily improving. I did not see any improvement until the 3 injection.

JOconnor, that's some good news ! I hope that Entyvio is your magic drug and that it will allow you get off of the pred completely; 20+ years is enough for sure.

Waiting for appt for second infusion of Entyvio, praying I do not react as badly this time round. Getting off preds is a hope many here doth have, for in a vicious circle are we entangled when the biologics worketh not.

Colon, colon, tis toil and trouble,
Flare ups burn, preds on the double.
Oh for a bourbon, a shot of rum,
a jigger of vodka, a slash of gin,
may not feel better, might make one numb.:drink:

Tylenol 4 mutes the pain,
and brings out the Bard in me again.

O Entyvio, Entyvio, shall our bowels you heal,
so the abdomen not riots aft every meal?
Can we our pains finally bid adieu,
and suffer not more what flesh is heir to?:yfaint:

Finally going to have my first infusion in two weeks. Down to 35mg of Prednisone now and hoping Entyvio will be my savior and all that I'll need going forward. Gotta get off the Prednisone. I'm really curious if anyone had any positive reactions after there first infusion. Most stories I'm hearing aren't until after multiple infusions.

I've had two infusions and don't think I am seeing any benefit yet. Hard to tell with all the other stuff I am on, though!

Reacted poorly within 48 hours of first infusion. Waiting to try number two. it is suspected i started the Entyvio too soon after the Remicade.

Dont worry, just be prepared. )

3rd dose will be next week for me!! Not getting better feel worse!!

Is anyone taking Imuran at the same time? My GI has me on it as it's supposed to increase the effectiveness of the Entyvio.

Greeko said:

3rd dose will be next week for me!! Not getting better feel worse!!

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Hope it starts working out for you Greeko. Keep us up on how your doing.

I was given Imuran and reacted negatively, thus I doubt my gastrodoc would try that and a biologic.

Praying that Entyvio will work for you Greeko. Are you experiencing a worsening of your Crohn's, or Entyvio side effects or both?

Sorry Polar Bear haven't been on the forum for a while. Went to the hospital a few times from the pain and blood I was experiencing.. The doctor at the ER asked me if I wanted oxycotin for the pain I was experiencing.. This is the main reason I don't bother with the ER. It almost feels like a waste of time.. Things aren't getting better and I had my 3rd infusion just recently. This is the worst I've felt since when I was diagnosed 15 years ago. Had a visit with my GI specialist and we added steroids which I hate.

I pray Greeko that all your sufferings will not be wasted. I posted earlier in a subforum this week that my gastrodoc is stopping my Entyvio infusions. After a second infusion, the side effects came back stronger. Back to see my doc on Friday.

I dont think we Crohn's sufferers can get away from the preds. Dang insomnia even with sleep aids. As you were bleeding, it was not a bad idea to go to ER, just in case. I do not have bleeding episodes, just a great deal of pain and extreme fatigue.

I am managing, er surviving, with Tylenol 4. I was on the oxy once for a severe sinus infection related to Humira side effects. A serious dose of preds and T4s plus three rounds of antibiots did the trick. Six weeks to feel "normal"

Keep in touch via PM and let me know what course of action you will be taking.

your Alberta neighbour the ole polar bear, in need of thermal hot springs!