HealingWell
Search Close Search
☰

What to do when your REMICADE stops working...

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/27/2015 10:49 PM (GMT 0)
Hello. Been on Remicade on/off for 8 years and last May is stopped working. My Crohn's symptons came back with a fury. I'm on the max dosage and now up to every 6 weeks. I'm afraid if i stop i will feel even worse than i do right now, but i'm pretty convinced my body has built up antibodies to the Remicade. What should i do?

mad
Posted 2/27/2015 11:37 PM (GMT 0)
you should get the test to confirm that you built antibodies to remi. No need to keep taking something thats not working. Speak to your GI, they are other options. jealous yours worked for 8 yrs. I was on remi for 1 1/2 built antibodes. switch to humira and I think thats not working for me.
Posted 2/28/2015 3:26 AM (GMT 0)
Yes, fignewton is right, you should get the test to confirm you have antibodies to remicade (they're called ATIs - antibodies to infliximab.)

You should also get your "trough levels" of infliximab tested. That is when they test your blood levels of remicade right before you are due for a new infusion.

Those two things will tell you what your situation is, and whether you should up your dose further or switch to another med.
Posted 2/28/2015 4:45 AM (GMT 0)

beave said...
Yes, fignewton is right, you should get the test to confirm you have antibodies to remicade (they're called ATIs - antibodies to infliximab.)

You should also get your "trough levels" of infliximab tested. That is when they test your blood levels of remicade right before you are due for a new infusion.

Those two things will tell you what your situation is, and whether you should up your dose further or switch to another med.

yeah, but what other drug? if remicade doesn't work you're pretty much SOL.
Posted 2/28/2015 5:56 AM (GMT 0)
Not necessarily but almost maybe.
I am about 2yrs ahead of you and it hasn't been fun
First if you do have antibodies you can try humira.
More likely your body found a way around the medication in which case Humira and other anti tnfs won't work.
That's my situation
Now Doing ENTYVIO which is what comes after anti tnfs.
Slow not as effective as remicade and had to add MTX to help it to work?
Good luck
Posted 2/28/2015 4:00 PM (GMT 0)
Was on remi for 1 1/2 built antibodies switched to humira first month on humira was good but dont think its working. felt better on remicade with antibodies to it then i do on humira. possible switch to entivio next. I have heard of poeple switching from remi to humira and it worked for them......... Talk to you GI, bounce the choices off his head and see what he thinks. GL............
Posted 2/28/2015 8:08 PM (GMT 0)

Old Cronie said...
Not necessarily but almost maybe.
I am about 2yrs ahead of you and it hasn't been fun
First if you do have antibodies you can try humira.
More likely your body found a way around the medication in which case Humira and other anti tnfs won't work.
That's my situation
Now Doing ENTYVIO which is what comes after anti tnfs.
Slow not as effective as remicade and had to add MTX to help it to work?
Good luck

tried Humira first, barely worked if any... stopped after 6 months. Is Entyvio any more dangerous than Remicade?
Posted 3/1/2015 2:47 PM (GMT 0)
I assume it cant be any worse than remi or humira.......
Posted 3/2/2015 3:39 AM (GMT 0)
Entyvio is supposed to be much less dangerous but also less effective and very very slow
Had to add pred as a bridge slowly tapering but also had to add MTX
After REMI I think we build up high tolerances to biologics.
It was a lifesaver for me 15 years ago and I really thought the Crohn's mystery was solved, NOT
@#%*#!

As to what you should do?
For me anything and everything until something works
Includes steroids and diet like gaps and PALEO
Probiotics maybe even antibiotics
Now I am on Entyvio, MTX, pred, augmentin
Life is bearable but not like it was on remi.

Hang in there more meds coming
Check out Prochymal and stem cells
Or anti map therapy
✚ New Topic ✚ Reply