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Ulcerative Colitis
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AbigailRose
Regular Member
Joined : Sep 2012
Posts : 48
Posted 2/23/2016 4:56 AM (GMT 0)
Hey guys. I haven't posted on here in a long time, but I was hoping for some insight. I'm starting entyvio tomorrow and was wondering what to expect? Simponi stopped working on me after close to 2 years, and before that remicade only worked for about
a year. Hopefully entyvio can be my long term solution. But what is your experience with it? What kind of side effects do you get? When should I expect it to start working? And any pointers for the infusions would be great to. Thanks guys!
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 2/23/2016 12:05 PM (GMT 0)
It's slow working, 12 plus weeks to work in a lot of cases.
Charlie3
Regular Member
Joined : May 2013
Posts : 293
Posted 2/23/2016 1:27 PM (GMT 0)
I have had good luck with Entyvio . It took about
4 months to kick in but now I can say I am in remission .
AbigailRose
Regular Member
Joined : Sep 2012
Posts : 48
Posted 2/23/2016 1:53 PM (GMT 0)
I don't know if I can wait that long. I didn't sleep at all last night because I was up every 15 minutes with d, and the cramps were making me throw up too.
I'm currently on uceris to help, would prednisone work better?
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 2/23/2016 2:02 PM (GMT 0)
The Uceris drawback is that it's just a single dose, and for some it's not strong enough. Prednisone or IV steroids might be necessary if you're not responding to uceris. I'd recommend calling your gastroenterologist and tell him/her what you're experiencing. You'll need a bridge to get to entvyio and that might mean, unfortunately, more corticosteroids.
I would like to think entvyio is your long-term remission solution. However, have you considered surgery? I don't think you need it now, but you've been through a lot of biologics and uc treatments, which doesn't leave a whole lot of options. Coming to terms with that eventuality/possibility is difficult for some, so, I figured I'd throw that one out there to keep on your "just in case" backburner. I'm a very analytical/research type person, who looks into all treatments as I hate surprises.
AbigailRose
Regular Member
Joined : Sep 2012
Posts : 48
Posted 2/23/2016 2:51 PM (GMT 0)
I was so anti surgery, but a couple weeks ago I broke down at the doctors and said I would do anything. I'm still seeing a pediatric Doctor right now, but I am getting a second opinion from an adult Doctor next week. I figured I would give entyvio a chance, but if it fails then I know surgery is coming, and I'm okay with that. I was only diagnosed in March 2012, and I tried lialda and asacol, but they caused me to get worse. Then I tried 6mp, but I caught c diff and ended up in the hospital in a full blown flare after the c diff passed. And then the last few years when remicade worked, I felt great, almost like a normal young adult again, and I just never felt that way with simponi.
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 2/23/2016 3:13 PM (GMT 0)
prednisone works A LOT better for me in the case of severe inflammation. Unfortunately none of the biologics did anything for me, including Entyvio, and I had surgery... On the positive side, surgery has been hugely positive for me. I am off all medication, and I have a better view of the future. I was always very concerned about
getting older with UC, especially in my personal case, because it was so persistent and difficult to manage. I didn't want to have UC dictating everything I did for the rest of my life.
Of course, surgery is extreme and there are no guarantees, so you have to really get to the point where you feel like it's the right thing for you. You will see all kinds of negatives and positives and I guess, when it really comes down to it, it will depend on how much of this you can take and what options you feel might work for you. My UC was so severe, I couldn't imagine anything controlling it short of surgery. By the end i was so tired of fighting it and my life was at a stand-still...
Hopefully entyvio works well for you. I don't see any reason it wouldn't. if you can't wait, I think if I were in your shoes, I would switch to prednisone. You could also ask about
cyclosporine to get you over that hump. At the same time, that's not a long-term solution - maintenance would still rest on entyvio working. It would just buy you some time. I think i'd also consult with a surgeon, just to wrap your head around it. You don't have to make plans because you consult. I felt better about
surgery after i spoke to a real person who painted a realistic picture.
if you ever want to chat, i am here :)
UCmas
Regular Member
Joined : May 2015
Posts : 58
Posted 2/23/2016 3:25 PM (GMT 0)
AbigailRose- I don't have any answer for you but I am curious and I am afraid I will run into this issue in the future.
When you(or others who tried) say Remicade/Simponi is failed,How do you decide? A full blown flare means Remicade/Simponi failed? Why not pred to get the flare under control and continue with the medication you are on to see if it works?
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 2/23/2016 3:38 PM (GMT 0)
With biologics you can run a Prometheus test to check for minimum biologic medication concentration within your blood, just before your next scheduled dosage (if it's insufficient then dosage can be increased to bring the patient back into response). That test also checks for the presence of antibodies created by your immune system against said medication. Antibodies might mean the medication is less effective (result, increase dosage) or no longer going to work at all, based on concentration. If one's developed sufficient antibodies then switching to another biologic makes sense.
If you're at maximum dose, not receiving a response, and don't have antibodies then you might've failed the tnf-alpha class of biologics (humira, remicade, and simponi) and therefore need entvyio.
AbigailRose
Regular Member
Joined : Sep 2012
Posts : 48
Posted 2/23/2016 3:42 PM (GMT 0)
Ucmas- when my remicade stopped working i was in college In a dorm room and I could not leave my room or go to classes. I took steroids for probably 3 weeks with no change, so I went in for IV steroids, and they helped a little but I was still really sick so my gi decided to switch to simponi. With simponi i had a colonoscopy in Jan 2015 and then i started getting really sick in October, so I did a capsule endoscopy and mre that only showed inflammation in my large intestine, so I started on prednisone. I then had another colonoscopy in November and it showed some pretty bad inflammation so I continued on prednisone, while increasing my dose of simponi (every 2 weeks vs every 4). I weened of steroids and then I got really sick again so my doctor thought it was best i go ahead and switch,
Sorry the spelling is bad I just got my IV in and it's hard to type
UCmas
Regular Member
Joined : May 2015
Posts : 58
Posted 2/23/2016 5:08 PM (GMT 0)
Thank you ipoop & AbigailRose.
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