Entyvio vs. Xeljanz

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.

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

Thanks, Crazydad for the link. Very helpful and informative. Also supports my case for Xeljanz...

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.

Interesting. I did not know being in a flare increased our risk for blood clots. That's scary. How is your recovery going, noodles?

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.

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.

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:. 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.

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).

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.

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...

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