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Anyone on Entyvio started noticing mild symptoms?

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Ulcerative Colitis
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Posted 9/25/2015 8:18 PM (GMT 0)
So, I have been on Entyvio for a year. All symptoms disappeared. Recently started to notice a few minor symptoms that include blood. I'm wondering if this is just a hiccup and not a sign the drug is losing its effect. Please share you experiences. Thank you
Posted 9/25/2015 11:25 PM (GMT 0)
sorry I can't answer your question but wondered when you started noticing improvements? I've had my 3rd infusion....still flaring.
Posted 9/25/2015 11:39 PM (GMT 0)
Were you on any other treatments at the beginning of Entyvio that you aren't on now?
Posted 9/25/2015 11:41 PM (GMT 0)
Hey Tough. So, it's hard for me to say when Entyvio started to help because right when I started entyvio, I also went on prednisone (sypmtoms were getting too much and didn't want to wait for entyvio to start working).

I looked at my health log. Below is a brief:

8/2014: pre entyvio, pre pred:
extreme pain, crazy urgency, lots blood, diarrhea every time, 5-10 bms/day

9/2014: began entyvio
9/2014: began prednisone
11/2014: still some symptoms: urgency (but can hold), some bleeding, mixed stool, cramps now and then; overall, a lot better than pre-entyvio and pred
end of 2014: finished pred
1/2015: infrequent cramps (gas discomfort), tiny trace of blood (no longer pool of blood), mostly formed stool
4/2015: 90-95% back to pre-disease.

I hope the above is of some help.
Posted 9/25/2015 11:44 PM (GMT 0)
Gary, I was on pred initially with entyvio, then entyvio and imuran. Currently entyvio and imuran. This combo gave me no symptoms for a long while. I'm hoping whatever is going on now is just a hiccup.
Posted 9/26/2015 12:06 AM (GMT 0)
Sounds to me like prednisone was doing a lot of the work and since going off it you have very gradually gotten worse and worse. It just didn't manifest itself in symptoms for a while. The Entyvio never worked as well as you thought.
Posted 9/26/2015 4:16 PM (GMT 0)
Thanks DD. Yes it does help.
Sounds like for a time after you stopped pred that Entyvio kicked in. Hope this is a blip and you get on track again.
Posted 9/28/2015 9:08 PM (GMT 0)
I won't be able to answer for a while, since I'm only on my 2nd dose, but I am also on 15mg of Prednisone now, too.

I had been on 20mg for a month before I started Entyvio and while it certainly helped it wasn't until my 1st dose of Entyvio that I improved dramatically. My GI thinks I'm very responsive to the Entyvio while I'm more inclined to think it's the Prednisone, but then again the Pred had plenty of time to work and it was a sudden change. I tapered to 15 after my 2nd infusion a week ago and will start on 10 tomorrow. My next dose is in 3 weeks.

I had some loose stools/bloating end of last week but it coincided with my period, which usually throws things in disarray. Back to normal (fully formed, no bloating) now. We'll see how it goes this weeks at 10mg.
Posted 9/29/2015 2:16 AM (GMT 0)
have been on entyvio 1 year. Noticed last 2 months slight bleeding but yesterday actually a clot or 2. Have had mucus and fluid leakage for 2 years. My GI say he has no other treatment to offer at this time, maybe in a bout 1 year. Know he is doing his best, but 1 year does not sound too great. I scheduled a 2nd opinion consult in a much larger city with a highly recommneded GI. Have to wait till December to see him, but can wait.
Overall still better than before entyvio
Posted 9/29/2015 3:42 AM (GMT 0)
This morning, the blood amount increased. I'm currently sick (caught a virus). I wonder if being sick is causing the disease to wake up?

Monkey10- you never became symptom-free on entyvio? It seems we started entyvio probably around the same time. I had a few months until now of no symptoms.

Thanks all for sharing.
Posted 9/29/2015 1:31 PM (GMT 0)
oh no! Sorry to hear DD.

For me a cold/virus eases my symptoms dramatically. I pretty much go back to normal. I think it's because my immune system starts to combat a real threat. Once threat is eliminated, colitis symptoms return.

I don't remember if you're on rectal meds. Maybe try that and probiotics. I guess if it's really worrying you could try a low dose of pred to see if that gets you back on track.
Posted 9/30/2015 12:32 AM (GMT 0)
never symptom free... leaky butt, gas gas and more gas. But over all feel so much better. Not as many accidents, can actually drive to work without looking for bathroom most days. More problems just after eating than any other time. Still say entyvio has improved life.... just not symtpom free
Posted 10/1/2015 2:36 AM (GMT 0)
Wanted to give an update. No blood at all today or yesterday. My cold is gone (mostly). Let's see how long this will last.

Yeah, Tough. I used to come to the same conclusion as you for a few years. Always felt my symptoms were less when I was sick with a cold. Mentioned it to my doc, but I don't recall him having anything substantial to say about it. I should get back on the probiotics... the good days make it easy to not keep up on things like probiotics. I'm currently not on rectal meds.

Monkey10, sorry to hear about your situation, but I'm glad to hear entyvio has improved the quality of your life.
Posted 10/1/2015 2:46 AM (GMT 0)

MONKEY10 said...
never symptom free... leaky butt, gas gas and more gas. But over all feel so much better. Not as many accidents, can actually drive to work without looking for bathroom most days. More problems just after eating than any other time. Still say entyvio has improved life.... just not symtpom free

In my opinion, having accidents is not acceptable. It's not remission, it's not even doing well. It seems like sometimes people minimize things and UC people find things like accidents more acceptable than the outside world. I find it completely unacceptable to have "less accidents". Acceptable might be, light blood on TP when you wipe, some mucus or looser BMs, those aren't great but I could live with that... accidents, no way. When you're on a drug that costs 15k a month and you're still having accidents, there is a problem.
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