HealingWell
Search Close Search
☰

vedolizumab

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/22/2014 8:41 PM (GMT 0)
I just spoke to my GI about vedolizumab...Remicade has not been working for me and I was actually going to get surgery (even saw a surgeon). They both suggested I hold off to try this drug and see if it helps.

My GI has a few patients that were on trial for it and they're doing great...I'm the first to officially sign up after it got approved but he's got many patients who are getting it as soon as it's available. As far as when we can actually get it...they're trying to work that out with Takeda and the insurance companies. Should be very soon though.

He's really excited about this drug, he think it will be first line of biologics to try for UC in a few years. We'll see how it goes, if this doesn't work I'm off to surgery, I'm done missing my life because of this disease.

Oh yea, it's a 30 minute infusion.
Posted 5/22/2014 8:57 PM (GMT 0)

UCHater said...

He's really excited about this drug, he think it will be first line of biologics to try for UC in a few years. We'll see how it goes, if this doesn't work I'm off to surgery, I'm done missing my life because of this disease.

Good luck, let us know how it goes. I was one of the first ones to try Simponi. I had to jump through flaming hops to get Blue Cross Blue Shield to cover it after the FDA approved Simponi. It took them about 10 days to get it straightened out, the major issue wasn't getting them to pay for it but it was getting them to add Simponi into their computer systems. It took them a little while to figure out that they had to get it added to their computer system too, they didn't know why they couldn't approve it at first....ugh

I agree with you about missing out on life, it's so unfortunate that with UC that we miss out on so much and it's usually in the primes of our lives.
Posted 5/22/2014 9:35 PM (GMT 0)
I hope it works for you! At the very least it seems like a safe alternative to the other meds we have been taking. Let us know how it goes!
Posted 5/22/2014 11:58 PM (GMT 0)
Thanks I'll let you guys know how it goes and soon as I get info about availability.

And yea ks...it really does hit at the worst possible time. I have two young kids (1.5 years and 6 years) and I can't take them anywhere...I miss all the 6 year old's soccer games, canceled multiple trips to various types of parks, fishing, can't really go on vacation, etc etc. It won't be long before he won't actually WANT to do these activities with us and I'm missing it all.

My mom has to come over in the morning just to take him to school because I can't even reliably do that! My wife leaves too early to take him, but she takes the younger one to daycare.

So I've decided I'm not waiting around, if this doesn't work I'm done...unless some other miracle happens over the next few months.

Post Edited (UCHater) : 5/22/2014 6:05:59 PM (GMT-6)

Posted 5/22/2014 11:59 PM (GMT 0)
Thanks for the info! I have an appt w/ my GI in the morning to discuss. They did the vedilizumab trial at their office as well and had positive results.

I know insurance is going to be a huge pain.
Posted 5/23/2014 3:34 PM (GMT 0)
Saw my GI this am. He is very excited about vedolizumab. They are anticipating having the drug and ready to start administering it mid June.

I went ahead and did bloodwork (including a tb and hep b test). I'm due for a flex sig (June 16).

I also had the option to go into a drug trial where vedolizumab is administered via syringe. I decided not to do that b/c I could get placed in the placebo group.
Posted 5/23/2014 4:43 PM (GMT 0)
Nice. Yea they did blood work on me also and scheduled me for a flex sig next week.

Mid June seems so far, I hope we can get it a bit sooner! :)
✚ New Topic ✚ Reply