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Did Entyvio work for you? How long to kick in?

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Ulcerative Colitis
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Posted 1/7/2021 7:22 PM (GMT 0)
Hi! I'm new here. Diagnosed with mod-severe UC in October right after my 36th birthday. Started Entyvio in early Nov, and have now had three infusions. I was on budesonide along with that, but tapered off about a week ago. At this point, I'd say I've had about a 50% improvement in symptoms. For me that means going from 15-20 extremely urgent BMs (diarrhea with lots of bleeding, etc.) to now average 5 urgent BMs, some of which are still quite loose. So, I'm doing better, but I don't feel like I have my life back either.

My GI says it's promising that my bleeding has stopped and frequency has decreased, and she thinks it's worth doing 3 more months of Entyvio (every 4 week infusions). She thinks that 100% remission is still possible. If not, she'll switch me to Stelara.

So I guess my question is, any of you more experienced folks have a slow start with Entyvio and end up with a satisfactory outcome? I'm just feeling a little defeated/pessimistic as I had high hopes when I started it. Thanks.
Posted 1/8/2021 4:21 AM (GMT 0)
Hi MBwUC,

Can you add mesalamine enemas and oral meds to boost your success rate? Unless you are allergic that may help. Also try a high quality probiotic and maybe diet (food journal).

Do you get any side effects from Entyvio?
Posted 1/8/2021 5:46 AM (GMT 0)
Hi MBwUC,
I would suggest you to stick with Entyvio as GI suggested as there is improvements.
Sometime it takes time to get into remission.
As Jane suggested mesalamine enemas calm down rectal inflammation.
My daughter is on Entyvio from last june and doing very well.
Her symptoms improved quickly after the first loading dose.

Best wishes
Posted 1/8/2021 6:58 AM (GMT 0)
On Entyvio I slowly improved over about 9 months. Most effective therapy that I have had in 12 years. But it did not get me to 100% remission; just down to mild symptoms.

I suggest you give it at least another 3 months. It's known to have very few longterm side effects.
Posted 1/8/2021 7:56 AM (GMT 0)
It can take a while to heal severe inflammation. I'm on xeljanz which is supposed to be fast-acting compared to entyvio and even that took me 5 months to reach full remission
Posted 1/8/2021 8:06 PM (GMT 0)
Entyvio takes awhile. But I’ve been on it for 3 1/2 years and in remission. I
Was about in the same condition as you when I started. I was steroid dependent but started a slow taper with my first infusion and was able to successfully get down to zero steroids for the first time in a year. There were slight hiccups along the way but I used mesalamine suppositories and uceris foam on those days. It was about four months before I had pretty complete absence if symptoms although a colonoscopy around that time showed slight microscopic inflammation — so I wasn’t completely clear but by the next scope I was in complete remission. Since then been living and eating normally again and most days forget I have UC. I still have hiccups every once in awhile but keep the rectals on hand for those days.

I’d say it’s extremely encouraging that you’ve seen a decrease in symptoms plus able to be off budenoside after only 3 infusions!!!!! Give it a couple more months and don’t be discouraged! Progress can be slow.
Posted 1/8/2021 9:43 PM (GMT 0)

FlowersGal said...
Entyvio takes awhile. But I’ve been on it for 3 1/2 years and in remission. I
Was about in the same condition as you when I started. I was steroid dependent but started a slow taper with my first infusion and was able to successfully get down to zero steroids for the first time in a year. There were slight hiccups along the way but I used mesalamine suppositories and uceris foam on those days. It was about four months before I had pretty complete absence if symptoms although a colonoscopy around that time showed slight microscopic inflammation — so I wasn’t completely clear but by the next scope I was in complete remission. Since then been living and eating normally again and most days forget I have UC. I still have hiccups every once in awhile but keep the rectals on hand for those days.

I’d say it’s extremely encouraging that you’ve seen a decrease in symptoms plus able to be off budenoside after only 3 infusions!!!!! Give it a couple more months and don’t be discouraged! Progress can be slow.

Thank you so much for sharing your experience, it's very encouraging! I just got results back of a repeat fecal Cal Pro and while my level is still very high, it's almost half what my first result was back before starting meds. My GI is pleased with that response.
Posted 1/10/2021 5:06 PM (GMT 0)
Yes that is encouraging! I’ll also add that I haven’t been sicker than normal. I get my yearly flu vaccines and take Airborne whenever I feel a slight sore throat and I don’t think I’ve even had a cold since I started infusions.

If you go to the normal 8 weeks between infusions expect a little backslide on the first interval. Again the rectals are extremely helpful during those times.

I love the short infusion time. Hang in there and keep us posted on your progress!
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