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Posted 7/18/2014 2:07 PM (GMT 0)
I have started Entyvio but am not taking an immunosuppressant along with it. My doctor, however, is not in favor of including immunosuppressants even with Remicade, Humira, etc. The evidence is mixed as to whether combination therapy truly helps prevent the antibodies or not. I was on Humira alone for 9 years until it stopped working, which as far as I have seen is the longest on this board. Gary is right, however, in that this is a conversation your doctor should be having with Takeda Pharmaceuticals.
Posted 7/18/2014 2:09 PM (GMT 0)
Not only is not as systemic....the buffer reason really is it's not made of mouse proteins (or whatever animal is in remicade) which is what your body is likely to react to. So there's a much smaller risk of developing anti bodies to entyvio.
Posted 7/18/2014 3:18 PM (GMT 0)
Did my first infusion yesterday. I'm on 40 mg pred also. I was in the hospital with huge 104 fevers to which they found no cause except my crohns. Had a colonoscopy and it looked bad so started the pred to help me get in check while Entyvio kicks in. Hope for only a short stint. So far solid(flat chunks) stool just 3 or 4 times a day and no real blood. Hope to taper after 1 week if this last. Gonna have to wait 2.5 weeks instead of 2 for my next infusion though since I already have tickets to go see my new grandson on the next scheduled infusion week. Hope thats not a problem :(
Posted 7/18/2014 3:43 PM (GMT 0)

garylouisville said...
Entyvio is gut specific, not systemic such as Remicade, and some other biologics. Many doctors like to use AZA or 6MP to help the body to not create systemic antibodies to the systemic biologic drug, rendering the drug useless. Since Entyvio is not systemic the immunosuppressants are not necessary. I know this drug is new for doctors but it is your doctor who should be asking the Entyvio people this question, not expecting you to provide the evidence from someone on the Healing Well Website Forum.

Though your conclusion is correct, your reasoning is not. Firstly, the drug DOES act systemically, since it acts in the blood. Secondly, it doesnt matter if it is only in one location of the body, the chances of developing antibodies are still the same.

However, since it is a fully human antibody, and not a chimeric or humanized antibody, the chances of developing antibodies to it are low (4% I believe I heard, compared to about 30% for Remicade).
Posted 7/18/2014 4:19 PM (GMT 0)
Yes, vedolizuMAB is a monoclonal antibody and as far as I know, every healty human immune system creates anticores against monoclonal antibodies.
Marauder93, vedoLIZUmab means it is a humanized antibody. Not fully human like adalimumab. Immunogenicity was low in the trials(http://www.atmjournal.org/article/view/2931/3851) like you said; but even if it is low, people like us(refractory patients) shouldn't chance it I think. But I can not be sure. I don't want to use cytotoxic chemicals unless it is needed. Will contact takeda. Thank you for response.
Posted 7/18/2014 4:45 PM (GMT 0)

xy123 said...
Yes, vedolizuMAB is a monoclonal antibody and as far as I know, every healty human immune system creates anticores against monoclonal antibodies.
Marauder93, vedoLIZUmab means it is a humanized antibody. Not fully human like adalimumab. Immunogenicity was low in the trials(http://www.atmjournal.org/article/view/2931/3851) like you said; but even if it is low, people like us(refractory patients) shouldn't chance it I think. But I can not be sure. I don't want to use cytotoxic chemicals unless it is needed. Will contact takeda. Thank you for response.

I just checked my sources; you are right, it is only humanized. I guess I was thinking about the anti-MAdCAM antibody drug I am taking, so thanks for bringing that to my attention!

I also agree that if I was on Vedo, I would take an immunosuppresant, at least until data comes out concerning its use with Vedo.
Posted 7/19/2014 2:27 AM (GMT 0)
I'm agreeing with Gary here. Your dr has Takeda resources for the specifics. One unanswered question for the new drug is if and what bridge therapy is going to be the best. It doesn't work right away, so do you stay on what you are already on...or if you are flaring, and not on an effective therapy, do you stay with that ? We are still hanging on to Pred till symptoms dictate.
Posted 7/19/2014 9:37 PM (GMT 0)
I'm 21 years old and I've done two doses on Entyvio. I'm taking folic acid and methotrexate with it. I've been pretty fatigued on it so far. I switched over from Tysabri, which was working decently but has the PML risk. I've had Crohn's for 11 years and currently have a temporary ileostomy. Hope it works out for your daughter and she gets to keep her colon/avoid an ostomy.
Posted 7/19/2014 10:43 PM (GMT 0)
Marauder93, would you share the name of the anti-MAdCAM antibody drug you are taking?
Posted 7/20/2014 4:01 PM (GMT 0)
xy123: It's a study drug, currently in the second phase. Right now it's being referred to as PF-00547659. I'm also in the study.
Posted 7/20/2014 4:05 PM (GMT 0)
churey360, thank you.
Posted 7/20/2014 11:56 PM (GMT 0)
@ xy123 - Just to add, I posted a thread not too long ago with 2 papers talking about the drug if your interested. One looks at the pharmacological characterization of it while the other is the results of the phase 1 study. If you search the drug name on this forum the thread will come up!
Posted 7/21/2014 4:58 AM (GMT 0)
Marauder93, I looked at it. Thanks.
Posted 7/21/2014 11:24 AM (GMT 0)
Katmom: just checking in :)

How many doses has DD gotten now?
And side effects or noticed symptom changes (hopefully not from just the prednisone.)?

Wishing well to all trying this new drug!

*fingers crossed*
Posted 7/22/2014 6:02 PM (GMT 0)
Only 2 doses in. Next loading dose on Aug 7th. No miracle so far, bad week. More when I have better news. Keep healing Embers! Love your Twitter feed.
Posted 7/23/2014 2:53 AM (GMT 0)
I just got my first infusion today after four pokes to get an IV :( Within an hour a had a super bad headache and was so tired I almost fell asleep in my lunch. Anyone else react this way to entyvio? Also the nurses were talking about me getting a port... I don't know how I feel about this. I feel like I don't need an IV often enough that it is necessary, but I do know I have horrible veins.
Posted 8/23/2014 4:00 PM (GMT 0)
I'm starting Entyvio next week. I'm curious if any of you who posted earlier have seen any improvement in symptoms yet? I'm the first patient for my doctor to use this medication. He tells me the Iowa University Hospital Trials showed "Amazing" results. I'm very hopeful.

If this medication fails we are moving to surgery.
Posted 1/6/2015 11:48 PM (GMT 0)
I hope Entyvio will deliver all it promises.

NOTE to Scum1 (and other with similar backgrounds):

I noticed that you took Remicade in the past and were subsequently on Humira plus Methotrexate. What were the reasons for the change? Did you have bad reactions to Remicade, or develop antibodies against it?

Post Edited (working2Bhealthy) : 1/6/2015 4:51:40 PM (GMT-7)

Posted 2/25/2016 5:48 PM (GMT 0)
Living with IBD for years ,never really in remission. Recently went on entyvio. 1st dose mild side effects, felt great for a week. 2nd dose mild side effects no improvement. 3rd dose server fatige stomach pain, leg pain for about two days. Now home for the past three days cause I'm so fatige to go to work. Leg pain ect. At a lost
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