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Entyvio Update: Now What?

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Ulcerative Colitis
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Posted 12/19/2022 2:26 PM (GMT -5)
Hello fellow UCers -

I've been on Entyvio since 9/21. I haven't really seen improvement at the 90-day mark now, I'll need to make a decision on next medication to try when I see my GI again on 1/14 (assuming I still experience no change).

Now that the FDA has put step limitations on Rinvoq and Xeljanz (all JAK inhitibitors), all patients must first try a TNF inhibitor (Humira, Remicade, Simponi) for at least 3 months and experience failure before they will allow the JAK family. My GI is recommending Zeposia since it's not a TNF or JAK, and does not have the same step requirement.

My thoughts: Zeposia's side-effect profile is similar to the TNFs and JAKs, and yet less is known about the medication. I'd rather not waste my time and just move directly to a TNF inhibitor, but the question is which one? Humira, Remicade, Simponi?

I'm not optimistic about the TNFs. I REALLY just want to try Rinvoq as I've heard great things and that it's fast acting, and if I have to spend 3 months on a TNF inhibitor that will likely not work, I'd rather get that process started ASAP.

Thoughts?
________________
CollegeGrad85
UC dx in 2009
Ileorectal anastomosis in 2010
Now - Proctitis
Posted 12/19/2022 3:09 PM (GMT -5)
I think there is at least anecdotal evident that remicade is more effective than humira in UC patients.

Zeposia is pretty new for UC so the side effect profile is not entirely established. The warnings for the JAK inhibitors only came out after several years of use in clinical practice.
Posted 12/19/2022 9:44 PM (GMT -5)
I haven't heard of anyone here using Simponi ... not sure why. Humira never kicked in for me after the loading doses. Remicade I saw improvement almost right away, but it took almost 2 years with dosage changes until I was in full remission.

I agree with what Poopydoop said about Zeposia.
Posted 12/19/2022 10:13 PM (GMT -5)
Some people in the Entyvio Warriors group on Facebook advise giving Entyvio six months, but that presumes you can stand living with whatever your symptoms are right now. My GI also mentioned that you can go to every six or every four weeks instead of every eight weeks for infusions on Entyvio if necessary. It's the only one I've been on, and it's worked for me, so I don't have advice on the other biologics, although it sounds like you're mostly just interested in getting relief. I hear you 100% on that. Good luck!
Posted 12/20/2022 2:52 PM (GMT -5)
You’ve been on entyvio for 90 days? So how many infusions have you had?

It took me 4 months to get to symptomatic remission, although a colonoscopy at 6 months still showed inflammation at the microscopic level.

I had seen improvements before that 4 month mark though — namely being able to successfully wean off prednisone.
Posted 12/20/2022 6:44 PM (GMT -5)
Thank you! How long/how many infusions of Entyvio before you noticed improvement?

GrittyHope said...
Some people in the Entyvio Warriors group on Facebook advise giving Entyvio six months, but that presumes you can stand living with whatever your symptoms are right now. My GI also mentioned that you can go to every six or every four weeks instead of every eight weeks for infusions on Entyvio if necessary. It's the only one I've been on, and it's worked for me, so I don't have advice on the other biologics, although it sounds like you're mostly just interested in getting relief. I hear you 100% on that. Good luck!

Posted 12/20/2022 6:46 PM (GMT -5)
I've had 3 infusions so far. I have my fourth infusion on January 4th.

FlowersGal said...
You’ve been on entyvio for 90 days? So how many infusions have you had?

It took me 4 months to get to symptomatic remission, although a colonoscopy at 6 months still showed inflammation at the microscopic level.

I had seen improvements before that 4 month mark though — namely being able to successfully wean off prednisone.

Posted 12/21/2022 12:22 AM (GMT -5)
Entyvio is a slow starter medication. Many years ago a few members in the crohns forum was on Simponi, but I haven't seen that particular medication used in a long time. From what I have seen on Xeljanz & Rinvog's websites you must fail 2 TNF blockers is their recommendation. Of course, the next hurdle is getting insurance to approve it.

Remicade has a good track record for UC. Everything hinges on the severity & extent of the disease. Good luck with your appt.
Posted 12/21/2022 6:13 PM (GMT -5)
I was on Budesonide while I waited for my first Entyvio dose, and also serious probiotics, and I think the Budesonide was doing the heavy lifting. However, I was able to wean off it toward the end of those three loading doses. I think I got really lucky.

Still, most folks in that Entyvio Warriors group would say not to quit just after the three loading doses. Some do report significant improvement after the first maintenance dose (the fourth infusion) or even later. But it's all a cost/benefit analysis, right? There are only so many biologics, so it makes sense to give it the old college try before moving on, BUT one can only live with serious symptoms for so long waiting for a med to kick in.
Posted 12/21/2022 7:46 PM (GMT -5)
Are those crohns or UC patients on entyvio warriors? Asking because the time frames are different for UC vs crohns. For UC, 3-4 months is about the right time frame to assess if it's working (does not necessarily mean remission but at least a clear sign that it's helping). For crohns it can take longer.

Whether or not a drug works depends not so much on the severity of inflammation, but on the subtype of UC that you have. There are different variants and that's why different drugs work for different people. Scientists are doing research into how to categorise it so that doctors can predict which drug will work for each patient but until that is fully developed it is unfortunately a case of trial and error in finding the right treatment.
Posted 12/21/2022 11:39 PM (GMT -5)
Remicade worked GREAT for me for over 20 years. Never had any side effects at all. I built immunities to it in the end. Humira just didn't work for me and Entyvio just quit working after about a year. Everyone is different, just have to decide for yourself with your doctor's help. good luck
Posted 12/22/2022 2:57 PM (GMT -5)
I would give entyvio 5 doses before writing it off. It was 5+ years ago now for me so the timeline is a little fuzzy. I must have been showing some improvements after the loading doses because I do recall seeing an uptick of symptoms during the tail end of my first 8 week stretch between infusions.

How are your symptoms? Improvements can be subtle sometimes and you’ll have up days and down days at first
Posted 12/22/2022 4:52 PM (GMT -5)
(Yes the Entyvio Warriors group includes both UC and Crohn's patients--that's a good point.)
Posted 12/24/2022 1:12 AM (GMT -5)
I only had to fail one biologic, i.e., Humira (and in fact I did not 'fail' it. My GI thought that if we added immuran would could wipe away the few antibodies I had built. But I refuse to take Immuran because when I did in the past it gave me brutal nausea). So they approved me for Rinvoq and I have never looked back! It may not work for everyone, but right now it is considered the most effective medicine for UC (see articles by Dr. Peter Higgins [Uk] and Dr. Jean-Frederic Colombel [US]). I was feeling better in three days, a calprotectin test went down from like 6580 to 180 in three months. Then we did a colonoscopy and I was in remission (Mayo score=0).

As you can see, I'm really excited about this medicine. Do your best to try to get it!

Tonito
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