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Entyvio has stopped working for me. :(

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Ulcerative Colitis
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Posted 10/4/2021 12:22 AM (GMT 0)
I've been on Entyvio for almost 1 1/2 years (every 8 weeks) and about 5 months ago I noticed my symptoms appearing again. My doctor has gotten approval from them to administer it to me every 6 weeks now which will start on Nov 1. I'm two weeks into my last infusion and I'm already experiencing the return of symptoms and can only conclude Entyvio is no longer working for me. about 1 month ago the doc switched me to Prednisone since Budesonide also stopped working for this flare up. I'm weening off of Prednisone which is currently 20Mg per day. As of the 5th of this month the game plan was to cut down to 10Mg once a day for two weeks. The last month has been hell. I will call the doctor's office tomorrow to make an appointment to discuss where we go from here. Darn, I was doing so well on Entyvio at the beginning of this year then around April things started to go downhill. At first I thought if was just a bad flare up but now I'm convinced it is due to Entyvio no longer working for me. I'm starting to see other posts by people saying around the 13 month mark Entyvio just stopped working for them also. I'm so disappointed! Any recommendations on another biologic to suggest to my doctor?
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Posted 10/4/2021 2:41 AM (GMT 0)
That sucks - I'm sorry about that. Have you tried any other biologic except Entyvio or is that your first? Remicade or Humira is the next obvious step if you haven't tried either of those. Stelara and Xeljanz are more recent biologics, but not as commonly prescribed for UC.
Posted 10/4/2021 3:44 AM (GMT 0)
Sorry to know Entyvio loosing its effect.
Any flex sigmoidoscopy or colonoscopy scheduled?
DD too dealing with similar situation from July and managing with on and off budisonide.
She has a flex sigmoidoscopy scheduled this Wednesday .

Best wishes..
Posted 10/4/2021 1:40 PM (GMT 0)

NiceCupOfTea said...
That sucks - I'm sorry about that. Have you tried any other biologic except Entyvio or is that your first? Remicade or Humira is the next obvious step if you haven't tried either of those. Stelara and Xeljanz are more recent biologics, but not as commonly prescribed for UC.

Yes, I was on Humira for about 5 months but had to stop taking it due to severe panic attacks it was causing. From that experience I went to Entyvio. I called the doctor's office this morning relaying my current situtation and am waiting to hear back.
Posted 10/4/2021 1:43 PM (GMT 0)

Bloom93 said...
Sorry to know Entyvio loosing its effect.
Any flex sigmoidoscopy or colonoscopy scheduled?
DD too dealing with similar situation from July and managing with on and off budisonide.
She has a flex sigmoidoscopy scheduled this Wednesday .

Best wishes..

I just had a colonoscopy in Dec of 20 and it showed Entyvio was controlling my UC well. Once this flare up started around May even Budesonide wasn't helping me. So my doc switched to Prednizone which worked better. Unfortunately, I've never returned to my prior wellness since this latest flare up.
Posted 10/4/2021 2:20 PM (GMT 0)
It stopped working for in about the same amount of time as you. They tried increasing the dose and frequency but neither helped. Eventually I full on flared again and just voluntarily stopped getting Entyvio. It took my body a while to adjust, but then I was able to achieve remission without any drugs. It took a lot of work but it was possible.

I also found that while I was on Entyvio, if I got food poisoning or a viral infection like the flu, Entyvio did not protect my bowels. My life had to be pretty even and steady for the biologic to be effective, but it did have effect.

Entyvio was the best biologic I tried. No side effects aside from feeling a bit unwell for a few days after infusions. Remicade gave me drug induced lupus. Humira and Stelara did nothing and I had lots of side effects. I wish Entyvio lasted. It was a drag to have to go get an infusion every 4-6 weeks because it made it hard to travel or really live my life freely, but I did enjoy the health freedom it gave me in other ways.
Posted 10/22/2021 12:50 AM (GMT 0)
Update: My GI Doc has recommended we switch to Stelara which we're in the process of doing. For the time being he has me on 40mg a day of Prednisone and Mesalamine Enema's nightly. Thank God, after 4 days of being on the Enemas I'm starting to feel better and am definitely seeing an improvement!
Posted 10/22/2021 2:16 AM (GMT 0)
So sorry to hear about Entyvio ... similar thing happened to me.

Best wishes with the switch to Stelera. You should be able to start on it as soon as insurance approves it. No need to wait for Entyvio to clear your system since the 2 drugs work differently.
Posted 10/22/2021 5:56 PM (GMT 0)
Thank you! Here's hoping to success with Stelara!
Posted 10/22/2021 9:38 PM (GMT 0)
I am familiar with that feeling of disappointment. Before giving up on Entyvio we tried Prednisone as you have done. I also had a colonoscopy to check for visual inflammation, a calprotectin and CRP. Now on Remicade but Stelara is also appropriate. As CCinPA said you don't need what they call a "wash-out" period post Entyvio; you can start Stelara as soon as possible.
Posted 10/23/2021 1:38 AM (GMT 0)
My GI Doc at first mentioned Remicade however my first biologic was Humira and after being on it for 3 1/2 months I suddenly out of nowhere started experiencing terrible panic attacks and had to stop it. Within a week of being off of Humira the panic attacks disappeared. So do to similarity of Remicade and Humira we ruled Remicade out.
Posted 10/27/2021 11:50 AM (GMT 0)
Every 4 weeks on Entyvio was the magic number for me. My GI went straight from every 8 weeks to 4 weeks.
That lasted for over 3 years.
On Stelera now. Think I might have to bump that one too. Every 8 weeks is not doing the trick.
Loading dose was great!
Posted 11/15/2021 11:44 PM (GMT 0)
Had my Stelara Loading IV today. Here's hoping!
Posted 11/16/2021 4:15 AM (GMT 0)
I also had panic attacks from Humira. I told my doc about it and at the time he had not heard of that side effect . I switched to Remicade and do not have any side effects . I did get on Lexapro just after starting Remicade so maybe that helped? I was so bad on Humira that horse pills couldn’t calm me down. Anyway good luck on Stelara and don’t rule Remicade out in your future . The drugs have different chemical make ups.
Posted 11/18/2021 10:58 PM (GMT 0)

fractal44 said...
Had my Stelara Loading IV today. Here's hoping!

Good luck Fractal44! I'm slightly ahead of you with my Stelara journey; I had my second dose two weeks ago, and so far so good.

I switched from Humira to Tofacitinib / Xeljanz this summer, but the Xeljanz wasn't working so I switched again to Stelara. Big difference!

Post Edited (UCyousee) : 11/18/2021 4:01:01 PM (GMT-7)

Posted 11/18/2021 11:42 PM (GMT 0)
Glad to hear that, UC! Hope it lasts a long long time!
Posted 11/23/2021 8:05 PM (GMT 0)
Sorry to hear Entyvio stopped working. It never worked for me but I can relate to having medicines stop working as well over time. This disease is so unpredictable and frustrating. Good luck with the Stelara. If that doesn't work, I recommend trying Xeljanz. It's a pill, the co-pay is $0 in the U.S. with their assistance card, and it usually works quickly.
Posted 1/22/2022 2:34 AM (GMT 0)
How's the Stelara working fractal44...still on a good track?
Posted 2/5/2022 12:51 AM (GMT 0)
Hi Folks,
First, thank you all for your kind words! I had my first Stelara injection about a month ago. Lately, I've been feeling queasy a lot throughout the day and am experiencing quite a bit of gas during the beginning of bowel movements. I am averaging two bowel movements a day. I'm hoping it's not an issue with Stelara? My injection schedule at this point is every 8 weeks.

Post Edited (fractal44) : 2/4/2022 10:49:26 PM (GMT-7)

Posted 2/5/2022 1:38 AM (GMT 0)
So you have had the loading IV and 1 eight week injection, correct? I don't know anything about Stelara, but maybe it's still early? If things continue to deteriorate call your doc. I think they can move the injections to every 4 weeks for some people.
Posted 2/9/2022 8:56 PM (GMT 0)
Good luck with Stelara!
I'm in a similar spot. Entyvio was amazing for about a year and half but then starting flaring (maybe after vaccine or maybe a coincidence...). I did a 4 wk tapper and increased the frequency from every 8 weeks to every 6 weeks. But might be flaring again so we're upping it to every 4 weeks. If that doesn't work, my doc is talking about Stelara or Xeljanz next. (She's not ready to prescribe Zeposia yet, wants more real-world evidence).
Posted 6/27/2022 5:05 PM (GMT 0)
Hi Folks,
It's been awhile. Unfortunately, Stelara doesn't seem to be working for me. I just took my 5th dose about 2 weeks ago in conjunction with Budesonide because my inflamation numbers were so high. about 3 weeks ago I was feeling great and felt like I was going into remission but at the same time I was tapering off of Budesonide. When I transitioned from 3 tablets a day (9Mg) to 6Mg I could start to notice my symptoms slowly returning. The last GI doctor visit I told the doc that I thought Stelara wasn't working well for me and I was told let's try doing every 6 weeks instead of every 8. Well I have a call into the doc even though two weeks ago was my first 6 week shot I can tell my symptoms are returning and I had to go back on Budesonide (9Mg) per day. A few folks on this board have suggested I now try Xeljanz, opinions?

Post Edited (fractal44) : 6/27/2022 11:17:38 AM (GMT-6)

Posted 6/27/2022 5:09 PM (GMT 0)
Have you had a colonoscopy recently? Where is your inflammation located? If it is confined to the rectum than you may want to add steroid enemas and cut back on the entocort.
Posted 6/27/2022 5:13 PM (GMT 0)

fractal44 said...
Hi Folks,
It's been awhile. Unfortunately Stelara doesn't seem to be working for me. I just took my 5th dose about 2 weeks ago in conjunction with Budesonide because my inflamation numbers were so high. about 3 weeks ago I was feeling great and felt like I was going into remission but at the same time I was tapering off of Budesonide. When I transitioned from 3 tablets a day (9Mg) to 6Mg I could start to notice my symptoms slowly returning. The last GI doctor visit I told the doc that I thought Stelara wasn't working well for me and I was told let's try doing every 6 weeks instead of every 8. Well I have a call into the doc even though two weeks ago was my first 6 week shot I can tell my symptoms are returning and I had to go back on Budesonide (9Mg) per day. A few folks on this board have suggested I now try Xeljanz, opinions?

Stelara didn't work for me until I got the dosing correct, you may want to get your levels checked and adjust accordingly. I've been on it for a long time, I started out on the psoriasis dose and moved up to the IBD once it was approved by the FDA. There is a blood test to check for your levels and if you have antibodies. I'm always hesitant to discontinue biologicals until everything is tried because the next one can take a long time to start working.
Posted 6/27/2022 5:27 PM (GMT 0)
My FECAL CALPROTECTIN value was 2,077.2mg/kg collected on 4-28-22. I'll see what the doc says at this point. Don't know about you folks, but it's ridiculous getting an appointment with my GI doc with how far backed up he is with appointments. Because of it, last time I had to see their Nurse Practitioner for my April appointment. My doc is still backed up with appointments and even the Nurse Practitioner is 5 weeks out for an appointment from this past Friday. sad

Post Edited (fractal44) : 6/27/2022 11:37:43 AM (GMT-6)

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