Remicade failed. What's next.

Ok so I might be jumping the gun, let me backtrack

I was diagnosed with severe UC about a year ago at time of dx they couldn't do a full scope because inflammation was to severe and they didn't want to perforate the bowel.
I was hospitalized and started on remicade which was amazing. Literally a lifesaver.
Fast forward, in January I had a scope that looked clear (including terminal illeum)
March I wasn't feeling well and slowly feeling worse. By my follow up in May the GI ordered a CTE to rule out small bowel inflammation. There was mild inflammation but for the most part the test was a bust becuse the volumen stayed in my stomach and the intestines were collapsed.
Doc ordered a SBFT which came back with inflammation in the illeum and nodularity and diagnosis changed to crohns

Meaning, remicade isn't working if the inflammation is getting worse while on it. We are testing levels and antibodies to be sure because if the levels are low but there are no antibodies I could just increase the frequency of dosage. If there are antibodies it would mean switching biologics.

I think I would like to do stelara becuse it is an anti IL23. I don't know if my insurance would cover it becuse it is not YET approved for crohns. I think that is changing shortly. The other thing is that I am super busy in school so humira or cimzia might be more convenient than going for infusions. What do you guys think?
Maybe I am overthinking and should jist wait till GI calls with the results.

I agree, don't be too quick to ditch the remicade. If there are no antibodies or adverse reactions, remi is too valuable to give it up so easily. Remember, once you go off for a prolonged period, the antibodies WILL form and you'll wind up losing remicade forever. Up frequency or up the dosage first. Alternatively, combine w/ another med to boost the remicade.
Also, inflammation can go up and down on remicade, I don't think you can necessarily infer that it's not working b/c you feel worse and there's mild inflammation.

All the best!

Thanks guys!!
I really appreciate the responses.

Ok I see I was not clear. I am planning on staying in remicade if there are no antibodies. But right now evidence is pointing to antibodies.
I have been on imuran for a year (since started remicade in May 2015)
If the level is low without presence of antibodies then we shall increase the frequency. However the CTE showed inflammation inder 2 weeks after remicade


The antibody test is covered from mayo for me. But not Prometheus if that makes sense. Dunno why. Either way the hospital sends it to mayo reference lab in Rochester.
It's so dumb how insurance mandates our care. Flaring costs a lot more than a dose of remicade.
The least expensive hospitalization of mine was 18k.

NiceCupOfTea said...
It's so dumb how insurance mandates our care. Flaring costs a lot more than a dose of remicade.
The least expensive hospitalization of mine was 18k.

So true, but we have the same problem with the NHS in the UK. They don't want to give you the expensive drugs, but then if you flare and end up needing hospital stays, surgery, etc. it's going to cost them a whole lot more than Remicade would have done in the first place, as well having to give up a scarce hospital bed for you.

Some people with UC can get by with mesalazine their whole life, but for people with Crohn's that's not sufficient. It's never going to happen, but the NHS would probably make a net saving with Crohn's patients overall if they got all the but the mildest cases onto a biologic soon after diagnosis.

5ASA are not always effective in crohns so they are often just an expensive placebo
Immunomodulators are cheap and can be effective for many (I think my imuran costs a few dollars a month)