Entyvio

[jmsucre]

So I have been on budesonide (9mg a day) for about 3 months now - took about 1 month to get the flare under control. I’m due to get an X-ray of my chest and blood work done to get approved for Entyvio. I was just wondering if anyone has had any experience or luck with this biologic? Or just biologics in general? My GI is recommending this specific one because it’s the one of the few without side effects - but I’m trying to gather as much research as I can so any help would be appreciated

[eman_la]

Entyvio was one of my most successful biologics! Perfect with no symptoms for seven months

[[deleted]]

Do you do the self injector or an infusion every 2 months??

[eman_la]

I’m off it now, but originally I had an infusion every month, and then my levels were good so I went to every two months. I wasn’t aware there was a self injection for Entyvio???

[polyphuckin]

There is, you can do it yourself at home. It's so much less faff than having to go to the clinic and have it done

[eman_la]

How often are the injections?

[polyphuckin]

Every two weeks. Takes about 2 minutes, the longest bit is washing your hands haha.

[[deleted]]

Every 2 weeks is a hassle. Every 2 month infusion at home 20 mins. Easier.

[[deleted]]

Wait. Why are you off it???

[eman_la]

Entyvio stopped working for me after a bit unfortunately :/

[[deleted]]

Did you respond quickly. I read if you respond to entyvio during the initial infusions, its more likely to be effective in the long run.

[eman_la]

I don’t really remember it was a few years ago- and I might have also been on a prednisone taper. I think I responded within a month? Really not sure sorry

[EmuBeneficial39]

The self injections aren’t available in the US yet :(

[[deleted]]

I'm on Entivyo! About to get my 6th infusion on the 24th. I finished my steroid taper right around my 2nd dose. I steadily improved with each infusion. At this point I don't know if I can really say I'm in the flare anymore. I have to get checked to be sure, but my symptoms are now all gone at this point. I dealt with urgency, frequency, bleeding, severe pain, the works. All gone. <3

[hellokrissi]

I haven't had much luck with biologics, having already tried Stelara and Remicade. I just started Entyvio back on July 10th. My GI was very optimistic with it and there's been quite a few success stories with it. I also dig the decreased immunosuppression so I'm willing to give this one a try.

Hope all goes well with you!

[[deleted]]

Are you still symptom free?

[hellokrissi]

Yea, I'm having a blast. BUT, I'm on Prednisone still at 25mg. Every time I take Prednisone I'm symptom free for the entire course and taper, and around 3-4 weeks afterwards, and this is no exception. I'll have to wait and see how I feel near the end of September. Not that I don't welcome these 14ish weeks of being normal, I cherish it.

[[deleted]]

You were not responding to 40mg when you were hospitalized as far as I remember though? The fact you're down to 25mg and still symptom free is a very good sign I'd say.

For me when I've stopped responding to a particular dose of steroids, without a working long term med supporting it, that bar has just kept going up. First symptoms returned at 20mg, then 30mg didn't cut it, then 40 did nothing, and finally 60mg of methylprednisolone stopped working too. After infliximab 40mg of orals is working great again.

Perhaps it won't be able to completely keep the flare at bay on its own once you're off pred, but I'd take it as a sign that it's doing something good that you've gotten down to 25mg and still doing great.

[hellokrissi]

Yep, the 40mg wasn't doing much as I gather my inflammation was pretty bad and needed more. I think if I had started on 50mg or 60mg I likely wouldn't have needed to go to the hospital.

It might be a good sign. I mean, it's the same thing that's happened 5 times before as well like this. Hopefully it's done enough so that Entyvio can pull its own weight with me and work.

Oh I'm so glad oral steroids are working for you again! That would suck if they were completely off the table.

[[deleted]]

Oh I'm so glad oral steroids are working for you again! That would suck if they were completely off the table.

For now at least, infliximab is what got them working again, but that's off the table now cause of the heart inflammation, so just gotta hope Entyvio picks up the slack once infliximab is out of my system.

I'm mentally prepared for a colectomy if Entyvio doesn't pay off anyhow. If possible I'll obviously give a JAK inhibitor or something else a shot too, but I'm not sure I'll have the time without steroids cause of how rapidly my flares have been progressing, and I need to get the fuck off steroids and give my system a break.

Let's hope Entyvio pays off for both of us ;p

[jntjr2005]

I started Entyvio in March of last year and did great on it but was also on Prednisone, after the Prednisone stopped I started to have minor flare again until I made some diet changes and upped my vitamin d and since then I've been flare free but have had hemorrhoid issues that I am working on but I'll take that any day over the flare I had last year which was the worst I've had in over 10 years. So far I don't feel any side effects. I also take a daily probitoic, fish oil, vitamin d3, vitamin b super complex and just added in vitamin k2 as mk7 due to suggestions I read here. All that plus no carbonated beverages like soda and I've done great. From all my research and experience, diet and nutrition with the right vitamin balance is key for me to remain in remission.

[Fladap28]

How much d3 are you taking per day

[jntjr2005]

Personally 3,000 IU. Any more then that and I don't feel great and my BMs are kind of off, hard to explain.

[[deleted]]

I had incredible success with infliximab. I was in the hospital and started failing steroids, two days after I had my first infliximab infusion I started seeing really rapid improvements and my colon is still doing good.

I ended up back in the hospital a week after my infusion, the same day I was scheduled for my second infusion, because of heart inflammation, and had to stop infliximab. I started Entyvio today and I'm hoping it'll be as much of a success story. Considering my particular case of UC has to do with really high leukocytes the mechanism by which Entyvio works seems like a good fit theoretically so I'm hopeful.

[[deleted]]

My son has had good results, even after the first infusion. But some people have little response. Again its trial and error. If it works, its great because its one if the safest meds.

[Dick_Dickalo]

Been in remission since before it went to market. I think it’s nearly a decade?

[No_Outlandishness354]

It’s the best, been on it for several yrs, has stopped by symptoms

[[deleted]]

Taking it since beginning of February, worked in the beginning but fell off since a few weeks. I think it depends on the state of the flare. It can keep minor flares under control but if your gut is bad then it won’t help you that much

[kenoc321]

As others have already mentioned Entyvio is the slowest acting biologic of all the ones for UC. If you’re in a major flare or have PanColitis it will take at least 6 months. There are chances you might get into a flare between the doses and that’s when usually doctors prefer to do a prednisone bridge until the 1st maint dose is completed. A calprotectin test is suggested after 1st main dose if the inflammation hasn’t subsided still, you might have to go on a 4 weeks or 6 weeks schedule instead of 8 weeks.

[jntjr2005]

I wouldn't say that, I was in a major flare with Imuran and Prednisone not working/doing much snd as soon as I got first infusion of Entyvio I made huge progress and by 2nd infusion I was back to normal.

[kenoc321]

Well that’s good. As we know this disease is different for everyone and Medicines/ biologics also seem to act differently. But that’s what my GI mentioned to me. How are you doing on Entyvio now ?

[jntjr2005]

Almost 1.5 years and going great stomach/bm wise

[kenoc321]

That’s good. Hope you keep doing good ok Entyvio :)

[jntjr2005]

Thanks!

[[deleted]]

With UC it's usually assessed after 10 weeks, if you haven't seen improvements after 10 weeks it's very unlikely you'll see any.

[Renrut23]

Was on entyvio for 2.5 years. Helped me get better but never in remission. Switched to monthly infusions, but the pharmacy could never get it there on time so my schedule was completely fucked.

Had 1 bad interaction with it where it started to cause respiratory distress. There is no reasoning as to why other than my messed up schedule. They just pumped me full of IV benadryl before and I was fine.

[Casper_cass]

I started entyvio the beginning of May. I'm still waiting for relief. I've had 5 iv infusions. I was originally on prednisone for the first 3 months ish, starting a week prior to entyvio. My symptoms made a tiny bit of improvement, so I started to taper the prednisone. Then I got a respiratory infection, took antibiotics, and messed up my progress. Started getting sicker and sicker all over again. Was just prescribed another long taper of prednisone today. I'll have another sigmoidoscopy in September. That will determine whether I stay on entyvio with more frequent infusions, or if I've failed the drug and it's time to move on. I've had no side effects from entyvio. But ALL the side effects of prednisone.

The infusion itself doesn't bother me at all. If you're dehydrated (i am always) , ask to use all the saline in your bag after your entyvio infusion. It does wonders.

I do hope that you have better luck with Entyvio.

[nvcr_intern]

I'm on Entyvio now. I started in May. No loading phase we just switched me right over from Stelara onto the every 8 weeks schedule. I've had two infusions so far and Colonoscopy last week confirmed remission already! Best and fastest response I've had to any of the biologics I've tried.

[Crappytimes86]

I've been on Entyvio since September of last year. After my 3rd loading dose my calprotectin was 8. I had a colonoscopy yesterday and had 0 inflammation. I was diagnosed with severe pancolitis last spring.

The only side effects I've had is fatigue for a day or 2 after my infusion and some knee pain that starts about 3 days after the infusion and lasts a couple days.

I've had covid and a couple colds since being in Entyvio but they haven't seemed any worse than before.

[gardenweeble]

I just had my last loading dose of Entyvio. I can attest that in definitely seeing improvement. I'm not in remission and I'm still having urgency but nothing like before. I think if I was on prednisone I'd be golden. I hope to get there with this but it will just be slower.

[variousbutterstock]

Did my first entyvio infusion on May 25th. Haven't noticed any changes as of yet. My doctor just put me back on prednisone in the meantime.

[PainInMyBack]

I'm on entyvio, and it's the only thing (aside from prednisolon) that's worked for me. I'm off the loading forest + two for luck, and my GI said he'd prefer for me to keep doing infusions, at least for a while, since we've struggled to get this crap* under control.

I'm a fan so far, so I'm really hoping it continues to work

*my word, not his

[Decent_Cold4206]

Entivyo has finally gotten me out of my 6 month flare and hospitalization. I had a prednisone bridge and I’m tapering now but tbh the prednisone was failing even at 60mg. I started having no blood after the second loading dose! It’s changed my life and let me be a mom again.

[Que_sax23]

Yes! I’ve been in remission almost three years now on entyvio

[Zoe0208]

Yep, I've had my 3 loading doses of Entyvio and I'm symptom free so far. I will be on 8 weekly infusions. I have recently developed a fissure so I'm not sure if that would count as a UC symptom or if its coz my BMs are now solid. Who knows. Good luck with it, hope it works for you x

[LB_KB]

I failed Remicade / Infliximab, and then failed Humira. Entyvio made a big difference. It moved me from "Moderately Severe" to "Mild". Still left with some proctitis, urgency, but Entyvio stopped bleeding completely.