Vedolizumab?

[HarleyNRose]

:sign0085:

After a colonoscopy / endoscopy today my lovely life long friend 'Crohn's" is back to play havock with my life, my question is:

Can anyone give me information on the drug Vedoluzimab? Give me any stories if you have used it, any side effects etc etc etc.

My docs are putting me on the stage 4 trial (think its stage 4 here in Australia)

I don't know much about it, and will of course do lots of research, but the best information I can get is from people that have been on it and used it

Any info would be helpful and appreciated

Wishing you all a toilet and pain free day, week, life xxx :thumleft::thumright:

Cheers, Rachel :rosette2:

 

[michellew]

Hi Rachel,
i don't have any first hand experience with the drug, but I too am entering into a clinical trial here in Canada with the drug. Here in Canada it's in Phase III, and if all goes well, the drug will be provided for 5 years. Anything I've read is very promising as this manufactured drug targets the gut, it's not a drug that was developed for something else and it was discovered that it helps with IBD.

There are a few people that have posted in the forms about being in a trial for the drug, if you do a search for Vedoluzimab of MLN002 you may be able to find some info.

Good luck, we'll have to keep each other posted about how the treatment is going!
Michelle

 

[David]

Our wiki entry for Vedolizumab has a bunch of threads where it is discussed. Just follow that link.

 

[HarleyNRose]

Hi Michelle, I think we are in Phase III here in Australia too, good luck with this treatment, I truly hope it puts you in full remission and keeps you that way, I agree we can keep each other updated on how its going. Any idea when you start? I haven't been given approval or a date yet, so fingers crossed

Thanks for the link David, appreciate it :dance:

 

[michellew]

I'm in the screening process, and it looks like June 25 will be my first dose. I'll still be doing the MTX as well (I was hoping I'd get to stop taking it), if the new drug induces a remission, then I'll get to stop the MTX. I'll keep ya posted!! Good Luck!!
Michelle

 

[HarleyNRose]

I've been and done the MTX hated the side effects more so because I had the awful side effects but no improvement and certainly no remission :-(

Good luck Michelle, I sincerely hope this new drug gives you full remission and that you can get off the MTX once and for all and permanently and of course be in remission permanently

 

[michellew]

Tomorrow is scope day (yippee :eek2, apparently my CRP and fecal calpro weren't elevated enough to NOT have to have the scope. Lucky me.....The past few days have been quite 'uncomfortable', more so than usual.

If all goes according to plan, I'll be getting my first dose one week from today.

Michelle

 

[Scaryman]

Looks like I'll be going on the drug if my inflammation goes up. I'm doing to well on steroids at this time. You do have to have a elevated CRP, and other requirements. According to my Dr. The drug is about to be approved.

 

[Moe.]

Hi guys
Any weblinks on the studies.
Can barely find out anything about this drug.
Thanks

 

[Scaryman]

Hi guys
Any weblinks on the studies.
Can barely find out anything about this drug.
Thanks

All I know its in phase 3 trials here in the US. Meaning its safety trials at this point. Doctor says it is about to be approved.

 

[michellew]

You can Google: Vedoluzimab or MLN002, if will return some results. David (admin) also posted this earlier as well: Our wiki entry for Vedolizumab has a bunch of threads where it is discussed. Just follow that link.

 

[Scaryman]

I just got a call from my GI stating that this study is closing within 10 days, as a fyi. Trying to get more information if this means its going to be approved or not.

 

[michellew]

I haven't heard much about the study happening here in Canada (Nova Scotia). I didn't get to partake as my disease hadn't progressed (which is a good thing). Hope you get some answers!

 

[Moe.]

I thought they were releasing it next year.

 

[michellew]

I'm not sure when it's being released, in Canada it's currently in open label studies (Phase 3) trials.

 

[Nytefyre]

I start vedo on Sept 6. Phase III, open label and all that good stuff. Finished all the pre-screening stuff yesterday. I've been on mtx for about 1.5 years, but my gi and think that it has plateaued and is no longer helpful to me. Hopefully, the vedo will slam me back into remission!

Oh, first post in a long while! Haven't been symptom free all this time, just had other life stuff to deal with!

 

[Nytefyre]

I had my first vedo infusion sept 6. No real changes to speak of as of yet, but no problems with the infusion. I have my infusion schedule and it runs through 2016! EEK! and YAY!

 

[Nytefyre]

I was searching for Vedolizumab posts and found my old one from my first infusion. I have been on it for over a year now and am currently in remission. I go in once a month and the whole process takes 1.5 hours. Anybody else had good results with Vedolizumab?

 

[simplicity28]

Happy to hear you are in remission!
I have UC and was offered vedo as soon as it got approved. Have been on budesonade for four years, somewhat in remission, but developed adrenal insuficency.
Nervous about taking tjis drug. Side effects number one and long term side effects.
Have you heard this drug helping with UC and how bad are the side effects.
Thank you.

 

[theOcean]

simplicity28: We actually have a new support group for Vedolizumab that you can check out! Not too many people are on it yet so it doesn't have its own section in our forum, but it hopefully will as more people post about it. You can share your experiences and ask others for theirs in this support group, too.

 

[vtfamily]

Saw our GI today he said GI community is very excited about vedo...so much so that it is taking attention away from Stelara.

My son has been on Stelara for 16 months with GREAT results. Vedo and Stelara are in the same family of drugs, anti-adhesion, which looks like the new direction for treatment.

Good luck to you.

 

[Guest18]

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[stargazer]

Yup, been on the study for over three years! Its an amazing drug and I love it!