Looking for others' experience with Remicade/Humira

Hi,

Remicade worked for me after the 5th or 6th infusion...it was great for almost a year, but it eventually stopped working, which led to my decision to have my colon removed. I didn't try Humira.

Hi JHendrix, I did not try Remicade - I went straight to humira  - mainly for arthritis. I have a diverted pouch, but have bouts of cuffitis.. the humira doesnt seem to keep that at bay but it has helped the arthritis. I started last October, so 6 months into it. 

I have been on Remicade for 2.5 years, no issues with it at all. It’s more effective on Pouch inflammation than it is on the inflammation above the Pouch, in my case.

Thanks for the replies. I should have mentioned that I had a bad reaction (serum sickness) to Remicade and will be undergoing a trial of Humira. I've been told they are different drugs but I'm still a bit nervous with a TNF inhibitor. I was hoping to tap the experience of any who are allergic to Remicade and then tried Humira and what their reaction was to it. 

The hope is that it will close a fistula although neither the surgeon nor gastroenterolist think it will be successful (UC diagnosis remains vs Crohn's) . The thinking is to give Humira a try before going the permanent ileostomy route. 

CTBarrister, youve been on a biologic for 2.5 years. Is it something one stays on for life?

SAFF, what was the reason for diverting the pouch (I'm assuming that means ostomy?)

.....so many different scenarios out there.....

My son unsuccessfully tried Remicade pre j-pouch for his UC, but the thought was his colon was too far gone for it to help much.  Surgery came and after a great first 18 months with the j-pouch he developed chronic antibiotic resistant pouchitis.  He tried Remicade again thinking that with  the smaller pouch it could work.  But he had developed antibodies to it and broke out in hives, etc.  He did try Humira next and did not have any adverse reaction to it.  He saw a small improvement after the loading dose, but it was not sustained.  Now he is trying Entyvio and is diverted back to an ostomy while waiting to see if Entyvio will work.

Thanks for that Momma. I'm sorry your son has had to go back to an ostomy. Is it thought to be temporary? 

I developed a reaction within weeks of one injection of Remicade. I had actually been given one dose of Remicade about 15 yrs prior. At the time the proticols were diffetent. (They didn't realize you couldn't take it sporadically.)

I tested negative for antibodies before the recent infusion but clearly I developed them after that dose and thus reacted weeks later. That really helps me to feel better about trying Humira as there won't be any chance of antibodies to Humira at least. 

I hope your son (and you) find some peace in all of this and your son has the best possible outcome. 

I was on Remicade for 1.5yrs until it stopped working and then switched over to Humira and MTX. The MTX helps to prevent anti-bodies forming. Generally they keep you on the biologic until it either stops working or you have an adverse reaction or complication. Overall, Humira feels weaker than remicade, i'm not sure if that's due to the smaller but more frequent doses or that it's my 2nd biologic or some other reason.

Thanks jhendrix. Hopefully it is a temporary diversion but we need to wait and see how the Entyvio works and he might need some repair at his anastomosis as well.