Entyvio, 1 down!

Hope it starts working!

Keep us informed on how its working

That's great. I really hope we start seeing some success stories :)

Lets hope it does the job, looking forward to hearing how it goes

Some have asked about the interim protocol.
Despite my attending DDW_14, and several for credit classes on IBD, I am unsure. Most GI's(that I have listenened to ) believe that avoidance of a flare is key, so staying with your treatment till sypmtoms subside, or proving that you can stay steroid free at week 8 is the key even with new drug. No one has the exact recipe for transitioning to Entyvio. Getting free of steroids is a success criteria.
My daughter has exteme fatigue today-unusual for a gal that deals with that as a daily matter. She is still on 10 mgs of Pred and dropped the uceris two days ago( feeling like it was never much of a help, but who knows).
Will keep you posted if we are on the road to recovery.

Good luck and pls continue to update us!
B

I hope if it works it works fast. I didn't realize that it could take so long to work as someone posted somewhere. I'm hoping they got it confused with something else.

Yep, if it hasn't worked by then, it's not going to. No dose adjustments that I know of.
No real changes with my daughter. Fatigue eased up. Not ready to reduce Pred from 10mg yet.

Still 8-12 BM's, loose , urgency. Small blood with each stool
and plenty of mucus. about the same since hospitalization in feb. Pred not good for her emotionally, big mood swings. Think sleep has been ok. Anemic and pretty tired.

I've been reading on here for months, this is my first post.
I was Dx with UC in 2003, didn't become severe until 2008. Tried everything with no results until I got on Remicade, and it was my miracle drug. Remission for 4.5 years, with 3 minor flares. Last March, I had a flare, and they doubled my dose. In June it was still bad, so increased to every 6 weeks. Seemed to get back under control until this past March, and it lost effectiveness.
With my UC, when I flare, the inflammation is so bad that I get blocked up, and I can't pass anything but blood and mucus, and I throw up everything I eat. Colonoscopies, upper scopes, X-rays, multiple ER trips, CT scans... All shows nothing but inflammation. Finally last Monday, they saw a stricture, and I was hospitalized and prepped for surgery. Then a c diff test came back positive.. Put everything on hold. 9 days in the hospital, on flagyl and vedomyocin, they did another colonoscopy to confirm stricture... And it's gone. Just inflammation again.

Well anyway, on May 28th, all of my paperwork was submitted for Entyvio. I have Aetna, and it was a pain to get approved, because they didn't have a policy written for it. While I was in the hospital, it finally got approved. I was discharged yesterday from the hospital at 1030am, and by 130pm I was being infused. It's much diff than remi, as I could feel how much faster it was administered, but nothing bad. I had to stay after the 30 mins so they could do a flush, and then a 30 min observation period.

As of now, no change, but I don't expect anything. I was a little tired yest evening, and really slept hard this morning. Today I had a little more energy, but my doctor added 40mg pred while I go thru all the loading doses. I'm hoping that Btwn the pred, and maybe after my 2nd dose, I'll start feeling a reduction in inflammation and maybe so easier movement.

I know this was a little wordy, but wanted to paint a bigger picture, and sort of introduce myself. I'll keep everyone updated on my Entyvio journey, as I hope it gives me even some of the success that Remi gave me. If I can get another year or so without surgery I'll consider it a success.

Welcome Joey! Good luck and keep us updated.
B

Round 1 of Entyvio for me too. No reaction just tired. No difference in symptoms yet still hopeful.