Skip to main content

Well, I just got home from 20 days in the hospital with a micro-perf of the afferent limb and a fistula. They started me on steroids before I left. I had 3 CT enterographies and the Prometheious blood test that all came back "indeterminant". But, my doctors are pretty convinced that I have Crohn's so they started me on Remicade last Friday. I'm also on 40 mg of pred. I've done o.k. but still experiencing minor pain in the same site as before. Unfortunately, this is my last chance. If this does not work then, I will lose my pouch. I would like to ask everyone a few questions.

1. As the "gold standard and "miracle drug" that the docs claim Remicade to be, should I be 100% or does it take more than one infusion to do the trick? My next infusion is a week from Friday.

2. Has anyone tried Remicade only to have to try something else that has worked?

3. Is the surgery for pouch excision a terrible surgery? I am SO, SO scared to have this done. I've had 2 laparatomies and they were so tough.

4.Is there anyone out there that's in my situation?


Original Post

Replies sorted oldest to newest

Hi Lisa,

Have you tried Humira yet? All my research and personal experience has found it (and some other biologics) to be far superior to Remicade. Humira is made using human protein whereas Remicade is mouse protein. Remicade was a waste for me. It stopped working after 2 infusions. I have the exact same diagnosis as you. I have had my j pouch for 5 years and last year out of nowhere I started getting fistulas. My Promethius was "indeterminate", but it's crohn's...I know that.

Humira is something you can inject yourself, which for me is far easier than sitting through an infusion.

However, Remicade works great for some people, I don't mean to discourage you, only to say that other biologics may work better. It can definitely require more than one infusion.

I know how hard this royally sucks. All of it. My life/health is far from perfect, but I want you to know that my "miracle" drug was Humira, not Remicade. I am glad I chose not to let my GI force me to continue with Remicade and I proactively chose to try Humira instead.

Good luck and keep us posted. Please PM me if you want to talk.

Remicade is effective for some but not others. With an initial UC diagnosis, Remicade would be the first thing to try since it is approved for UC but not Remicade - not officially anyway. Conversely, Humira is approved for Crohns and may be more effective if that's what you have.

I only had one infusion of Remicade, and it was effective for a day. But I was far too gone for it to really help me by the time I started on it.

My daughter found that Remicade did little to nothing for her. It did seem to keep the bad from becoming really bad as quickly as without it, but it could not put her into remission. She tried Humira and it was minimally effective as well, and she absolutely hated Humira. It burns going in and being only 7 she screamed her head off when we would give it to her.

Jan Dollar says you can get Humira in a vile instead of a pen if you request it from the doctor. She says the advantage of that is that you can control how fast or slow it goes in, reducing the burn.

No help here on the drugs but I can tell you that even though pouch removal is major surgery, I recovered from it far faster than any of my other surgeries. I believe that is because I was finally removing the problem and I did a mind body program prior to surgery. Im not at all new agey but I definitely believe in the mind body connection in healing.

If you get to the point of seriously considering pouch removal, feel free to ask any questions you may have.
Just a quick note..Humira was JUST approved by the FDA to be a UC treatment.

I had Remicade for UC - 1st dose was great (basically cleared my symptoms), 2nd dose was ok, 3rd dose did nothing. 4th dose was a maximum dose and just basically got me through to surgery.

I've heard that Remicade and Humira are both more successful for Crohn's than for UC. However, Remicade seems to work better for UC than Humira.

Best wishes!
My experience with the drug was that it took a prolonged time to start making a difference. Wit Remicaid I remember there is an initial dos so I visited the hospital more frequently, then after the first few visited every 2 months.

i noticed about three months in it made a real difference for my UC. This lasted about 8- 12 months after that and then I started to deteriorate again. Both Remicaid and Humera seemed to work for several to many months, and then they were no longer effective.

The biggest concern is the increased cancer rates among remiciad and humera patients. There is the development of a cancer at a statistically significant rate to make a difference. the cancer is a rare form of leukemia that results in death within a few months of diagnosis. This occurrence is rare but noteworthy.
On the cancer note, they have done further studies to show that the earlier stats from the study done in 2006 were very inflated. The chance of getting the specific type of cancer from Remicade and Humira is barely an uptick from the chance the average non-user of biologicals face.

I do not think we are allowed to post hyperlinks, but the newer study can be found on the CCFA site. Below I am posting a summary based on the results:

"So we do have to put things in perspective here. The risk of developing
lymphoma or non-Hodgkin lymphoma, which really is the main cancer that we worry about with these medications, is only about 4 people out of 10,000 people who take it. To keep that in perspective, on no medications, just a random person walking around the street in the United States has approximately a risk of 2 people out of 10,000. So although if you were writing a news article, you might write that these medications double your risk of cancer, really what we’re talking about is 2 people out of 10,000 and increasing that to 4 people out of 10,000."

So in reality the chances of getting it doubles but if you turn it to percents it would be less than 1% bigger risk than a normal healthy person getting it.

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.