During my last scope which was about 2 weeks ago my surgeon said that she did not see any signs of pouchitis but said the pouch was mildly inflamed, and i had a stricture she dilated. i had the inflammation last time i had a scope. could enbrel help to get rid of that inflammation ? i would probably start it sooner if i knew it could. its hard to walk and impossible to do anything more than that like running, jumping, laying down to work on my car or boat.
Replies sorted oldest to newest
Probably not. I was on Enbrel for a few months before Humira was approved for AS. Not only did it not do anything for my j-pouch, it also was not very effective for my arthritis. Humira was MUCH more effective.
Jan 
Thanks Jan, are you still on Humira?
No. As a matter of fact, I've been off my Cimzia for about 6 weeks and will be starting azathioprine and Remicade in a couple of weeks. The Cimzia was OK for my arthritis, but I still have persistent pouch ulcerations, so my GI wanted to bring out the bigger guns. Remicade/azathioprine just has more data. After that, we might go with Entyvio.
I forgot to mention that Enbrel is not approved for treatment of IBD.
Jan
Jan my colectomy wasn't because of UC or Crohns I have FAP all the complications that people go through with their jpouch from UC ect. Am I at all the same risk with my jpouch? Like pouchitis cuffitis and same meds that people take like Humira and others ? Sorry if these are stupid questions
Sonny, pouchitis and cuffitis are much less common in people who didn't/don't have UC or Crohn's. FAP is a big enough nuisance, so at least here's some good news about it.
HI there, I am just like you withe the arthritis. I have a diverted pouch though, which on my last scope in October 2015 is showing signs of inflammation. THe arthritis is new thing for me and it has been really debilitating - when it first started walking and basic things like driving were difficult. I have now succumbed to prednisone and sulfasalazine which has helped me be more mobile. I have not heard of enbrel - but my rheumatoligist thinks infliximab is the best thing for it. Its very expensive in Australian - $20k / year or so, so I do not have this at present. I wish I understood what the link between pouchitis/ UC and arthritis was. It seems so many of us also have arthritis.
DG here's the thing Enbrel is I believe and anti-TNF inhibitor too, same mechanism as Remicade, Humira, Cimzia, Simponi. it was tested for efficacy in IBD, presumably both Crohns and UC, often they run those separately but it did prove superiority so never got an IBD label. and I want say it was out after Remicade but before Humira. Jan's direct experience is the first I have heard of it, but you know what you might get lucky and maybe you get some trickle down side benefits to your pouch inflammation. you can be our second test case. I wonder if the dosing of Enbrel just simply isn't enough, but you would think they tried that in the trials. Enbrel in and of itself is a successful med to treat Arthritis, Psoriasis and maybe something else. so maybe the pharma just got lazy or indeed its simply isn't effective.
My hubby took Enbrel for 5+ years, a friend has been on it for 10+. Both for arthritis. It worked WAY better than Humira for my hubby, but as biologics tend to do, it eventually failed.
I glanced at the thread, but didn't read indepthly, but Enbrel isn't approved for IBD, so likely no bump from it for your pouch.
SAFF - here's an article showing the links/crossovers b/w autoimmune disorders:
Bummer, was really hoping it would have some benefit there. who knows maybe it still will.
Hey Saff, just to let you know that Inflectra has been approved as a Remicade biosimilar in Australia, which should reflect on the price being more affordable.
I have only had two infusions of Remicade so far, and it's working well to treat my sacroilitis.
I was Enbrel for 6+ years strictly for my arthritis. It worked wonders for my arthritis but did not improve my pouch condition. In fact, I developed terrible inflammation in pouch while on Enbrel. My suggestion to you: yearly pouchoscopy even if you are feeling fine. Monitor that inflammation carefully so that it doesn't get worse no matter what biologic your on. Good luck!
Brewbirds do you know that your inflammation was a direct result of Enbrel?
DG, I believe the implication is that the pouchitis was in spite of the Enbrel, not because of it. It just is not a biologic that is used for IBD.
Jan
I think it's best practice to get your specialists to make a joint decision when it comes to biologics. My GI and Rheumy Docs had a quick conversation before deciding on remicade.
Sorry for the confusion, let me clarify. Enbrel did not cause the inflammation in my pouch. I started Enbrel strictly for my arthritis. But while I was on it, I developed terrible pouchitis. Again Enbrel didn't cause it, it just didn't treat it either from getting terribly inflamed. Had I caught the inflammation sooner, then doc would have switched me to Humira sooner. I had skipped two years of pouchoscopies because I had two children during that time. So my advice is to monitor your inflammation clearly and don't skip scopes. (I didn't intentionally, was bc I was pregnant). Even though you might feel good as I did, the inflammation can worsen without having many symptoms. Message me if you have any questions, I'd be happy to share my story.