I've not "graduated" to biologics yet, but combining two no-longer-effective antibiotics (Cipro + Flagyl) has worked very well for me for a few years. If you have two that used to work (without side effect problems) you could try combining them.

I've been on Remicade for 5 years.  Had my pouch-scope this week and still have three ulcers in the pouch.  But in general, Remicade has been very effective in eliminating my pouchitis symptoms.

I haven't had any side effects.  Some are scary, but I try not to stress over it.  I have frequent blood checks to monitor it.

I have been on Remicade since November 2015. Based on two scopes that have been done since starting Remicade I can say that it works better on pouchitis or inflammation in the Pouch than it does on inflammation above the Pouch. I came into Remicade with both and it seems to have really helped the pouch inflammation but not as much the inflammation in the neoterminal ileum above the Pouch, which is more resistant to the treatments we have thrown at it. I am not really symptomatic at all, however. Things are under control and the object sometimes is not to let things get worse. I have had IBD for 45 years now and it can be lived with if you can find something that sort of keeps it in check.

As far as side effects to Remicade- none, and I take methotrexate to suppress renal secretions. You should worry more about side effects from Methotrexate than the Remicade. The side effects of Methotrexate are counteracted by Folic acid. I forgot to take the Folic Acid a few days one week and developed some small mouth sores. That taught me a lesson: don't forget to take the Folic Acid!!!. And now I don't forget and no more mouth sores.

Nothing else whatsoever. I get Remicade 900 mg every 6 weeks now. All blood labs came back good since 2015. It's good.

I tried Remicade when I still had my sick colon, and it didn't work for me at all. Now that I'm exhibiting signs of chronic pouchitis, my GI would like me to go into a clinical trial for a biologic that is approved for UC/Crohn's but is in trials for pouchitis. I'm reluctant, since I didn't respond to biologics (including Humira and 2 other trial drugs) when I had a colon. 

Interestingly, my GI took Remicade off the table for this round, since studies have apparently shown that the really scary side effects (cancers etc.) are more likely in people who have taken Remicade and then gone off it for a period of time, and then re-started. 

I'm waffling about going back into a clinical trial, since I had no relief from those drugs in the past, but I'm not sure how long I'm willing to keep up the Cipro/Flagyl regimen. 

Lots of people (obviously, from the posts above) get good results from biologics. Just wanted to give a different perspective. Good luck making your decision!

Are you talking about Entyvio (vedolizumab)? It is different because it targets the gut, while the others are more systemic. Each biologic is different, so you really cannot lump them al, together. Even the biosimilar to Remicade is not the same as Remicade.

Jan

Jan, yes, it may be vedolizumab. I think that was one of the drugs I trialed when I still had my colon. It was a phase 3 trial so I knew I was getting the drug, and not the placebo. That would not be the case in the current trial, in which it would be a 50% chance that I would get the drug. Anyway, I'm still turning it over in my mind. It seems like a big commitment.

Like so many things for us sucess/failure with Remicade and Humira seen individualistic;  I would have to side with Karenchase on this one. Prior to my pouch surgery I was put on them (Humira first) and neither worked for me and the side effects were intolerable; hope I never have to take them again