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Entyvio vs. Xeljanz

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Ulcerative Colitis
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mandarip
New Member
Joined : Jul 2017
Posts : 9
Posted 1/21/2020 2:55 PM (GMT -7)
Hi all,
I'm currently flaring and will very likely be switching my medication again. I'm on weekly doses of Humira CF and showing intermediate levels of antibodies, along with my flare symptoms, and inflammation present in my latest colonoscopy (December 9). My GI put me on Uceris as a "bridge" med since we didn't have my Humira bloodwork results yet. The Uceris hasn't done anything to reduce my flare symptoms.
Right now, my choices are going to be Entyvio or Xeljanz. I know my GI is going to push for Entyvio because he is very concerned about the blood clot risk. I'm not thrilled about another medication via infusion - Remicade was a bust and I hate the idea of planning my life around an infusion schedule. Plus, I don't like the idea that it takes a lot longer to know if it's working or not.
At the same time, the Xeljanz blood clot risk is scary...
I'm just weighing all my options and would love any knowledge from the group.
Thanks!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 880
Posted 1/21/2020 5:14 PM (GMT -7)
I’m very happy with entyvio and am in total remission confirmed by colonoscopy. I have zero side effects and don’t get sicker more often so I don’t feel it affects my immune system. The infusions are very quick — only 30 minutes so I am in and out of there in less than an hour. Sometimes it feels like the checkin and setup take longer than the infusion itself. I’d say I was in symptomatic remission at 4 months. So there was a relief in symptoms before that — just still Some bad days here and there. Healing never happens overnight. Microscopic remission took a little longer but since I had no symptoms it was ok. Seems from what I’ve read on here with other meds that they all take a few months to get to relief/absence of symptoms.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16177
Posted 1/21/2020 5:47 PM (GMT -7)
Just know entyvio takes 10-12 weeks to work for some of us. This is an IV infusion every 8 weeks.

Xeljanz is 6 weeks. It's a simple pill you swallow.

There's Simponi, similar to humira if you didn't mind the self-injections. Simponi is once a month injections. It's 6 weeks on action.

There's also Stelara, loading dose is IV and maintenance doses are self injections. It's 6 weeks on action.
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Crazydad
Regular Member
Joined : Sep 2017
Posts : 67
Posted 1/22/2020 7:07 AM (GMT -7)
Read this article. Will help to get a better idea of what biologics work better for non-naive patients.

https://www.eurekalert.org/pub_releases/2020-01/aga-nag012120.php
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 1/22/2020 12:26 PM (GMT -7)
I'm debating on whether to try Entyvio or Xeljanz next at the moment too. I'm leaning towards Xeljanz myself, just because it works faster.
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mandarip
New Member
Joined : Jul 2017
Posts : 9
Posted 1/22/2020 3:37 PM (GMT -7)
Thanks, Crazydad for the link. Very helpful and informative. Also supports my case for Xeljanz...
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17743
Posted 1/22/2020 6:29 PM (GMT -7)
I personally would opt for xeljanz too if presented with the option of the two. It works faster and it's not an injection. Seems like a win-win. Let us know what you decide.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 1/22/2020 9:13 PM (GMT -7)

Crazydad said...
Read this article. Will help to get a better idea of what biologics work better for non-naive patients.

https://www.eurekalert.org/pub_releases/2020-01/aga-nag012120.php

That was a great article. Thanks for sharing that.
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noodlesnoodles
Regular Member
Joined : Nov 2015
Posts : 376
Posted 1/23/2020 10:41 AM (GMT -7)
I'd go for Xeljanz. My insurance forced me to do Entyvio first and I was worried the whole time I'd lose my colon before it started to work (it never worked). Xeljanz can start working in as little as 3 days. I'd only choose Entyvio if you are fine being on steroids for 3-6 months while you wait.

Keep in mind that being in a flare drastically increases your risk of a blood clot too. Spending 3-6 months flaring on Entyvio could be more risky for blood clots than taking Xeljanz.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 1/23/2020 10:47 AM (GMT -7)
Interesting. I did not know being in a flare increased our risk for blood clots. That's scary. How is your recovery going, noodles?
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 1/23/2020 11:53 AM (GMT -7)
This side effect is what I'm most scared of with Xeljanz:
Tears (perforation) in the stomach or intestines. Tell your healthcare provider if you have had diverticulitis (inflammation in parts of the large intestine) or ulcers in your stomach or intestines. Some people taking XELJANZ/​XELJANZ XR can get tears in their stomach or intestine. This happens most often in people who also take nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, or methotrexate. Tell your healthcare provider right away if you have fever and stomach-area pain that does not go away and a change in your bowel habits.

I'm pretty terrified after reading through the warnings and reviews.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 880
Posted 1/23/2020 2:26 PM (GMT -7)
Just FYI from my experience. I started tapering prednisone with my first entyvio infusion so was completely off steroids probably by Week 6. I was already seeing relief of symptoms by then and used Uceris foam and Canasa to tide me through bad days.

Another data point — don’t know what effect this had, but they screwed up my loading dose prescription and had me scheduled for 4 loading doses at 0, 2, 4, 6 week. By the time we figured it out I was on dose 3 already at week 4 instead of week 6 (should have been week 0, 2, 6. But I got 0, 2, 4.)

Anyway I was feeling way better and steroid free by month 3.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 1/24/2020 3:41 PM (GMT -7)
I'm leaning towards Entyvio now after reading that "tears in intestine" side effect with Xeljanz that is supposedly more common with people who have had ulcers....ummm and this is a UC drug? Seriously, wth. I wish I could still take prednisone. Sorry to hijack this thread.
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noodlesnoodles
Regular Member
Joined : Nov 2015
Posts : 376
Posted 1/25/2020 12:35 AM (GMT -7)
UC can cause tears in the intestines. Again, you aren't really putting yourself at risk for something you weren't already at risk for.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 1/25/2020 9:27 AM (GMT -7)
I guess I thought tears meant a perforation. You'd be increasing the risk from my understanding, maybe I'm wrong, but that isnt listed as a side effect on any other UC med I've ever taken. Read their website and the reviews on drugs.com. It sounds terrifying to me.
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mandarip
New Member
Joined : Jul 2017
Posts : 9
Posted 1/31/2020 11:35 AM (GMT -7)
Thanks again for everyone's insight. I wasn't receiving email notifications, so I didn't see the latest replies. Anyway, I saw my GI today. He's keeping me on Humira for now and adding a hydrocortisone enema (never done that, so that should be an adventure ::sarcasm, of course:smile. The Uceris hasn't put a dent in my symptoms, which are mild to moderate at best. He's not that concerned about my antibody levels, because my trough was good. Plus, my last colonoscopy was vastly improved from previous ones and the inflammation is only in the very last section of my colon. The theory is Humira was working for me, so we should be able to get it back on track. I'm skeptical, but that's not unusual for me. The initial problem was delays in insurance approvals after I changed jobs and I missed maybe 3 doses?
To follow-up on the blood clot risk, I did learn from him today that as IBD patients we do have a higher risk of blood clots, in general, which is why Xeljanz is even riskier for us. This was news to me.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 1/31/2020 1:01 PM (GMT -7)
Interesting. Keep us posted. I might be starting Stelara soon. It looks like a good option.
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mandarip
New Member
Joined : Jul 2017
Posts : 9
Posted 2/12/2020 11:38 AM (GMT -7)
Another follow-up, I did the hydrocortisone enemas for 6 days and felt worse. Way worse - more blood, more pain, and more frequency. Plus, I was getting up in the night to pass blood and very little stool. I haven't had that symptom since before I started Humira during my absolute worst flare. I hate getting up in the night and losing precious sleep - feel like it makes everything worse since I feel completely zapped of energy when my sleep is interrupted like that.
I sent a note to my GI office through our patient portal to keep them informed. I received a response from the PA-C - you may discontinue the enemas if you feel it's making it worse and plan on switching your meds at your next visit (March 2).
Can you tell I'm frustrated? Thanks for "listening" (reading).
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 2/12/2020 1:24 PM (GMT -7)
So you're just supposed to suffer until March? Yeah, I'd be frustrated with that response, too...
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mandarip
New Member
Joined : Jul 2017
Posts : 9
Posted 2/12/2020 1:45 PM (GMT -7)
Basically...my GI's office is supremely busy, which makes it difficult to get appointments on short notice. The March appointment was scheduled when I went in to discuss next steps at the end of January.
They gave me the option of calling for a prescription for an oral steroid (likely prednisone, ugh) if things get worse. The PA-C doesn't really manage my care - just responds to portal requests, looks at whatever notes, and makes a recommendation. She probably doesn't realize that my GI and I are avoiding prednisone as much as possible.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 2/12/2020 2:38 PM (GMT -7)
If you guys already discussed switching to Xeljanz or Enyvio at your visit in January, I see no reason they are making you wait until March to get started on one of them. Personally, I'd be requesting to start on one of those right now if it were me. Did you decide which one you want to try? I am really lucky my GI writes me back himself. Hydrocortisone enemas made me worse the second (and last) time I used them, too.

Do you remember how long it took to see relief when you switched to weekly Humira, by any chance? I just increased to weekly. Bi-weekly did nothing and I really don't expect weekly to do anything either but I'm giving it a shot.
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mandarip
New Member
Joined : Jul 2017
Posts : 9
Posted 2/12/2020 3:04 PM (GMT -7)
You make a good point, especially since I know it will take time to get through insurance. My GI was pushing Entyvio hard and he did explain the whole blood clot risk in more detail. If he was the one responding, I'd probably be more inclined to push back, but I don't want the PA-C to be the one making any decisions. Part of my logic there is when I went on Remicade I really didn't want to do the infusions at home, but she didn't listen to me and I'm afraid that will happen again if I don't say in person, to my GI's face - I don't want to do infusions at home.

I don't remember exactly, but I think it took about a month (+/-) to see relief with weekly Humira and I was good for about a year until I missed doses due to insurance changes. I hope that works for you. I was ready to declare Humira a miracle drug...
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 2/12/2020 9:06 PM (GMT -7)
I understand. At least your appointment isn't too far out then.

Thanks for the info. on Humira. That stinks you had to miss some doses due to insurance.
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limey
Regular Member
Joined : Sep 2016
Posts : 159
Posted 2/14/2020 3:01 PM (GMT -7)
I will have been on Xeljanz for a year at the beginning of March.
For me it has been a wonder drug and these days I forget I have UC, no rushing to find bathrooms and just a couple of BMs per day.
At the beginning of October I had to give up my medication starting on October 2nd as I was getting a knee replaced on the 9th .
I was concerned about losing my meds but I went a whole 6 wks without it.
Then I found I started to need them once more but this time I decided to to cut back on my meds to 10 mg in a morning and 5 at night.
Something I could not do before and I hope to cut my meds back to 5 mg morning and night so fingers crossed on that.
Do not be afraid of trying this type of meds, if you find one that works for you it can change your life.
BTW I will be 80 this year
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 871
Posted 2/15/2020 1:41 AM (GMT -7)
Hey limey good to hear you're still doing well. I had my one year xeljanz anniversary in January. I've been taking the 2x5mg dose for about 8/9 months. I started to flare a few months back but we caught it early (i measure my calprotectin every month) and got it under control with mesalazine enemas (which never worked for me in the past but this time did). I'm always nervous of another flare but most of the time I have no symptoms, not even pain which was always a big one for me. I think the blood clots issue is a bit overhyped. And when I took entyvio I was always catching colds (it affects the respiratory tract as well as digestive tract)
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