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Entyvio
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Ulcerative Colitis
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Imbeccak
Regular Member
Joined : Dec 2017
Posts : 43
Posted 5/13/2018 11:48 PM (GMT 0)
My GI doc wants me to start Entyvio since I cannot tolerate any of the Mesalamine products. I am very leary of the Entyvio.. Just wondering if any of you have tried this and your thoughts on it’s efficacy, side effects. Etc. Thanks in advance.
kevinwburke
New Member
Joined : Oct 2013
Posts : 12
Posted 5/14/2018 12:40 AM (GMT 0)
I has infusions for about
a year. Definitely helped me. Only side affects were a rash on my skin but pretty minor.
Had to stop due to separate liver issues but will go back to it if I need to. Let me know if you have specific questions.
Imbeccak
Regular Member
Joined : Dec 2017
Posts : 43
Posted 5/14/2018 1:01 AM (GMT 0)
Thanks Kevin! How long did the rash last and how soon did you notice an improvement with your UC?
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 5/14/2018 3:47 AM (GMT 0)
I can't do mesalamines either. I have been on Entyvio since January. I am very slowly getting better. I get tired the day after, but no other side effects. I was flaring quite badly when I went on. Going 10 to 15 times a day. Now I am averaging 5. I have been on steroids and am tapering off of them, so I am not sure where I will be once off that completely.
Casey_LB
Regular Member
Joined : Mar 2015
Posts : 310
Posted 5/14/2018 6:00 AM (GMT 0)
On Entyvio 2.5 years. Only side effect was a minor rash on my forehead for a few months which I guess was Entyvio, but can't be sure. It went away.
Improvement was slow, but assisted by hydrocortisone enemas. Noticeable improvements in a few months but continued to improve over a year. It took me from "moderately severe UC" (blood in stool every day, 5-10 bms per day) down to mild proctitus (no blood, still some issues with urgency). General health improved. I had lost 30 pounds in a few months, and I slowly gained most of that back.
I recommend it. Seems less risky than steroids or immune suppressants like Imuran or 6-MP.
limey
Regular Member
Joined : Sep 2016
Posts : 194
Posted 5/14/2018 12:57 PM (GMT 0)
I have had four infusions now and no problems to report and it sure has helped my UC
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1877
Posted 5/14/2018 3:51 PM (GMT 0)
Have been on Entyvio for over a year and will have my 10th infusion next week. No issues at all -- except for an increase in headaches which may or may not be related to the entyvio. Over all, though, I'll take the headaches rather than UC symptoms. I am in remission symptomatically. I was steroid dependent when I started my infusions and was able to wean off them for the first time with no issues by infusion #4. I too was worried about
it but felt I had no choice and I'm glad I did it.
IntestinalWasps
Regular Member
Joined : Mar 2018
Posts : 226
Posted 5/14/2018 5:22 PM (GMT 0)
Currently on Entyvio - The only issues I had was with the initial loading doses (first two) - They made me REALLY groggy and tired for maybe about
a week each time.
But after that it was smooth sailing.
valleyguy
New Member
Joined : Sep 2012
Posts : 19
Posted 5/19/2018 4:47 AM (GMT 0)
As I've mentioned previously, I started Enytvio just over one year. I've had uc for many years and other meds helped for a while. Then I was put on another and another and each one helped some but really did not satisfy. Sort of hit and miss.
It took about
two-three months before the full effect takes over but when it did it was like being re-born, not to get too religious but the effect must be similar. I can do all the things I couldn't do before and everything, to this point, seems like a prayer's answer. Of course, this is my experience and I cannot say everyone will benefit but I would certainly suggest one try it. Also, no side effects of which I'm aware.
After taking so many meds previously and suffering side effects from them, it might be worth a try.
Richard in NY
Regular Member
Joined : Nov 2012
Posts : 208
Posted 8/7/2018 7:03 PM (GMT 0)
I've been on Entyvio for a year and just had my first normal colonoscopy ever! I'm in full remission. No side effects at all. I've turned off my toilet radar and I'm not afraid to get in the car anymore.
Entyvio is the bomb!
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 8/7/2018 7:54 PM (GMT 0)
Long overdue relief! Congrats! Make sure to make the most of it
Txladi29
New Member
Joined : Aug 2013
Posts : 7
Posted 8/15/2018 4:46 AM (GMT 0)
I've been on Entyvio a year today. It's worked great for my UC, however it wears off at about
week 5. I do have one side effect of joint pain. Mostly the joint pain occurs in my ankles, but it has affected a few other places in my body. Joint pain started after infusion 3.
Good luck to you!
UCer23
Regular Member
Joined : Aug 2017
Posts : 155
Posted 8/19/2018 10:06 PM (GMT 0)
I've been on Entyvio for over a year. It has been the biggest difference maker medication wise so far for me. I started seeing positive signs during the loading dosages in the first 4-8 weeks. For many people, the timing they see results varies, I believe it can take a while before it starts to work so you and your GI will have to be patient with it potentially.
It hasn't put me in remission on its own so my GI and I are looking for the right medication to go along with it. I have felt no serious side effects, probably the only thing is being tired the 24 hours after getting an infusion, but that has gotten better as i get more infusions.
i would highly recommend it, the infusions are annoying to go to, but if it works then they are well worth it.
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