• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

When Remicade and Humira both dont work

I was on Remicade for a year and a half and it was my miricle drug, until it stopped working. I battle contstant fistulas and abscesses. After the Remicade we switched to Humira. That was about 6 months ago. Fistulas are not closing up, and am still not feeling better. I feel like the Humira is just not working for me. Anyone have both these drugs not work? What drugs are next? I wonder if I can try Remicade again or if it's too soon. Any thoughts? Many thanks.

Hi Beth, I do not know how bad the inflammation is for you, but just a thought, perhaps read the sticky about the stem cell transplant. I hope your doctor can find a solution. Have you tried Cimzia yet?
Hi Beth,

I was in a situation similar to yours. I started Humira in the fall of 2008 and was on it for 6 months or so before I flared and switched to Remicade. Remicade worked like a dream for me until last summer, when I had to up the dose and reduce the period between doses. I managed to stay on it until Feb. of this year before my doctor switched me over to a combo of Imuran and Cimzia. So far, it's working for me. I also have issues with fistulas that the Remicade helped with. According to my doctor it's still pretty early to tell if the Cimzia will help with those, but as far as my gut feels, I'm doing a lot better. You might want to talk to your doctor about the Imuran/Cimzia combo. From what I was told, the Imuran helps to slow your body's development of antibodies to the Cimzia in the hopes that you'll be able to stay on it longer. It's worth a try!

Good luck!
I was also thinking Cimzia.

I did the prednisone route when I was 8, then again at 16. Early to mid 20's was Imuran/6MP time.

Remicade was approved and I was first in my state to get it and I was one of the few with quite a bit of side effects. So that wasn't followed with more and I went back to Imuran.

I'm in a huge flare, so my GI put me on Humira about a year ago. Yup, just like every other med, it didn't do diddley squat.

My GI wants me to try Cimzia next, the problem is the prior authorization has taken over a month and I'm still sitting here. I've also been told that my pharmacy can't get it, so I have no clue what from there. My insurance is being wonky and wanted me to try some other med, my GI said no deal.

So Cimzia is the next obvious choice before we go to the scary brain infection med (which I don't want to try), then surgery if nothing else.

Yeah, check into Cimzia.
Im inthe position where Huimira didnt work (after pred for many years with aza and pentasa worked fine). I have adrenal failure now so we cant really use steroids, or they dont work anyway. Humira i had to stop due to reactions to it and they said more likely that remicade will be a no go as well because of that (more likely to have reations than with humira) and it seems now im in a massive flair and have cleverly now got both UC and crohns that the Humira maybe wasnt even doing as good a job as we thought.
Im not sure what my options are exactly because for the UC a full colostomy is recommended (im really not keen on this if i can avoid it) but if they are treating with neds for the crohns and UC together then i guess i should wait to see if everything improves if im going to have to be on meds anyway for something. Nobody mentioned cimzia not sur if its available in the UK. But they did mention trying cyclosporin, im not sure at all on whos every tried this. I think the idea was high dose IV for a week as we are facing urgent surgery otherwise and they want to give it a shot before i have to commit to the knives. I am willing to give it a go and i guess maybe they didnt even look into cimzia because it would take so long to ge approval and get it set up?
TBH i think they need to have a better idea for me exactly the extent of things than just kind of guess and pick a bandage big enough to cover all.
My understanding generally was remicade to humira was done but humira back to remicade was almost sure not to work - could be wrong though... (just based on remicade being from rat proteins so more lkely to react or for you to build antibodies where as humira is a hman based protein hence the better tolerance)
Thank you all for your replys. I feel really lucky to have this site as a resource. I am seeing my GI today and have surgery scheduled next week for this pesky fistula that wont close up. I guess we will have to talk today about either continuing on Humira and hoping it starts working or changing meds. I really thought Humira was going to be the best bet for me. I just really don't want to do pred again - be there done that. I will keep you posted. Beth.
Did the Humira ever do anything for you? like straight after the loading doses, and are you on fortnightly or weekly injections?