Remicade

I'll think you'll find on this site, if we did have Remicade, it failed or didn't last long. Most of us here are medication failures.

Sue

Sue is right..most of us are med failures. I was on remicade for about 8 months which included 8 infusions. After the loading dose I was in remission completely and tapered off prednisone. I had great quality of life at this time. I was very active and social. Remicade was my miracle drug until its effectiveness began to wear off which put my infusions closer together at the higher dose but it just stopped working. The Dr's added back prednisone with azathioprine but I was refractory. There was some discussion of Humira but the UC spiraled too fast leading me to the hospital and surgery. Unfortunately I don't think remicade lasts forever but there are other biologics out there.

Remicade didn't work for me. It was my last resort drug before surgery.

Thank you for your input.I was afraid that the Remicade was futile as it surely hasn't helped yet.
The Prednisone works but as he is weaned the urgency and frequency returns.Plus prednisone is so damaging.
My heart goes out to all of you that this is such a difficult condition to treat.
His dr's keep saying if he has the ileo he will be better off but his surgeon who did the 2 surgeries feels he will still have the frequent filling of the bag????
Problem being is that they do not know what he has.He has been consistently tested but they are saying unknown IBS and that there are many IBS that are not even identified.
So you feel that Humira will not help either? Thanks

Just to be clear....has he had surgery yet? Or does he still have his colon?

I have been doing well on 6MP but after finding Low Grade Dysplasia I'm having
J Pouch surgery next week. It seems like even if you're able to tolerate the meds
the possibility of having surgery is just being delayed. The inflamation and
damage from IBD pushes up your cancer risk every year that goes by.

I presume you mean IBD, since they don't give Rmicade for IBS. Failure of one biologic does not mean he will fail all biologics, but he certainly cannot stay on prednisone indefinitely. The longer he is on it, the greater he risk of serious, irreversible, long term complications. Each other drug, biologic or immune modulator, can take up to 3 months before being fully effective.

He can have the colectomy, retain his rectum for future j-pouch surgery, and get more time to figure out the diagnosis.

But, I am also confused as to whether he has had surgery yet or not, as the posts are conflicting.

Jan

It took a good three months before the 6MP kicked in for me. Slowly increasing
the dosage and frequent blood tests to monitor it.

Sorry for the confusion,yes,IBD and yes he had his colon removed in March 2010 for what they thought was UC and his jpouch in May 2010 and has been on antibiotics,prednisone(on and off)Budesonide,Asacol and some I can't remember.
He is now on 6MP,just reupped to 20 mg prednisone and the Remicade.

Sounds like perhaps he has Crohns? I have heard that Remicade seems to work better on Crohns than UC. Not sure if that is true or not. If the Remicade doesn't work then Humira would be a good option to try next.

Thanks Marianne,I hope the Humira may work also and there was a point last year that they thought he had Crohn's but now I think they just don't know what he has.
I feel that maybe docs should advise this website to patients when they are advising patients to go with the j pouch.
We were only told that he would go about 7 times per day which is really great next to 17+!

If he hasn't seen any results after 5 remicade infusions I would think its time to move on to Humira. If his colon is all ready out and he's still very symptomatic while being on meds he may have Chrons. Has he been tested for celiacs? Have you experimented with diet? Probiotics? Has his pouch been scoped and biopsied recently? I would push for some answers with the Dr's. I wish you luck in finding the right treatment for his symptoms.

Yes Randi he has been tested and retested,scoped experimented with diet,probiotics,etc.to no avail.His docs have tried everything.
They just upped his Remicade to monthly,but I think as you that the Remicade should have shown improvement by now.

How frustrating this must be. It really sounds like he's been through the ringer. Switching biologics would probably be his best bet. Good luck

Thanks Randi and best wishes to you!

I am still a little confused. He has had surgery and has a j-pouch. Have they every tried antibiotic for pouchitits? Not sure when or how they decide to use remicade or humira with the j-pouch

I did not have success with Remicade, I had UC. My twin cousins, who began infusions at 16, have had good success with it. They have Crohns. Only thing is they gained a little weight.

Hi Sandra,

I had UC and Remicade failed. I had the surgery 5 years ago and then last winter I was diagnosed with Crohns. I didn't want to really try the Remicade again, but I did. Once again it failed. BUT, I started the Humira and it has been a godsend! It is much easier (as it is a home injection, not a hospital infusion), has far fewer side effects for me, and has given me my life back.

I was wary because I thought that since I failed with Remicade, I would fail with all biologics. Not The Case!

Five infusions is long enough. Get him switched the the Humira and see how it does. It is a totally different protein (human vs. mouse for Remicade).

He is just wasting more of his life being sick and not responding to Remicade. Have him talk to his GI soon. If I had known this biological (Humira) would have helped this much, I would have run to the doctor!!

I am holding out massive hope for him!!!

~Tammy

If he's had 5 infusions, then he should have been on it for several months now, which means it's clearly not working. It sounds to me like they're just throwing whatever medications that seem somewhat relevant at him. I'm thinking you might want to get him to a better hospital or j-pouch specialist. And you didn't mention anything about immodium or lomotil, but either or both of those together would be worth a try I think.

I did not have success, but both of my twin 18 year old cousins have had great success. It is an individual thing.