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Humura stopped working, is remicade still worth a shor?

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Posted 8/4/2017 1:55 PM (GMT 0)
My doctor seems to think that remicade is not even worth trying since the the humura stopped working, on Entyvio now and I think it's looking it's affect as well, has anyone out there failed humura but had success with remicade . My doctor is suggesting stelara , but I don't want to use up all my options so fast. I would like to try remicade but mabe doc is right. Any advice would help.


34 m. Crohns diagnosed 2015
Currently 20 mg pres , tapering , imuran, entyvio
Posted 8/4/2017 3:43 PM (GMT 0)
I would give Remicade a go, particularly as Humira initially worked. The standard 8-week, 5mg/kg bodyweight dosing schedule isn't enough for some people: if you do go on Remicade and it starts failing, try increasing your dose/frequency first before stopping it. In some people with severe disease, the Remicade can get used up extremely quickly, which is why it stops working. If you can get a double or even triple dose, that's sometimes enough to bring the disease under control.

I mean, you were only diagnosed 2 years ago and don't have an awful lot of meds left before (presumably) surgery, so I would try everything - if you don't want surgery that is.
Posted 8/4/2017 5:51 PM (GMT 0)
I agree with @NCOT. It's worth trying. everyone is different but I tolerate remicade better than I did humira. Both worked for me but the humira caused me too many problems after a while.
Actually I just read a paper about what NCOT mentions about being able to adjust the dose and it sounded like for people that have a tendency to have the meds stop working, watching your levels of the drug early on and adjusting the dosage accordingly is very helpful in keeping the drug effective long term

Post Edited (Labradorite) : 8/4/2017 11:55:21 AM (GMT-6)

Posted 8/4/2017 7:28 PM (GMT 0)
Have you got a link to that paper, Lab?

My GI told me last year about research which showed that some people produce vast amounts of TNF (the inflammatory protein that anti-TNFs such as Remicade and Humira neutralise) and that in America triple or even quadruple doses of Remicade have been given to them. He said for funding and political reasons such mega-doses would never be allowed on the NHS :/ The annoying thing is that I was probably a person who would have benefited from heavy dosing early on. However, I started Remicade in 2011 and I doubt that knowledge would have been around then, so I wouldn't have got the extra doses anyway.
Posted 8/4/2017 8:29 PM (GMT 0)
I agree with NCOT and Lab.

I have experience with using a higher more frequent dose of Remicade. When I first started out 2 years ago we did 10 mg every week for 4-8 weeks then went to every other week for 4-8 weeks then went every 4 weeks, then every 8. We then lowered the dose to 5mg every 8 weeks. Stayed there until I had a stricture. I then went to 10mg every 6 weeks and now we are preparing to go back to every 8 weeks and eventually we hope to lower the dose again. My disease is diagnosed as aggressive severe fistulizing Crohns. I get my levels checked at least every 8 weeks. When I felt it wasn't working and I became symptomatic it was because my body was burning thru it....so during those times my GI adjusted my dose to higher dosages or more frequent infusions.

I had to sign a waver at the infusion center to get the dosing the doctor wanted at the very beginning. Insurance gave me a very difficult time about paying for it-so make sure you verify with them before you for it. Get it in writing. ( Still have that hanging over my head...) BUT it healed my colon. The other GI's thought the new director of their GI department was going to overdose me on Remicade....but he said he had done it before (not as aggressively though) and it worked.... I got the impression they don't like to do that but occasionally they will if it's necessary.

I honestly didn't realize that other GI's didn't do this. (NCOT...I too think you probably would have been helped with larger more frequent dosing. My GI stated that I am probably one of those people that can produce vast amounts of TNF so we have to closely monitor and change dosing as needed. Apparently not all GIs work like this?)

So NCOT and Lab are absolutely correct.

Clo
Posted 8/4/2017 9:50 PM (GMT 0)
I too think its worth trying Remicade. We found that havingmy infusions every 4 weeks was what worked for me. I responded much better with 10mg instead of 5mg. Back then I never had any issues with insurance covering it.

I hope you get to give it a try.
Posted 8/4/2017 10:37 PM (GMT 0)
@ NCOT its in a journal app I downloaded -"practical gastroenterology- a peer reviewed journal est.1977" title is "practical use of therapeutic drug monitoring of Anti-TNF therapy in IBD" by konstantinos Papamichail and Adam S. Cheifetz, February 2017 issue.

I actually downloaded this app several years ago but hadn't looked at it recently until yesterday. The most recent issue has some interesting things on rheumatic complications and treatment.

(fun fact: it also comes with a GI crossword puzzle lol, just incase you want to test your knowledge... and lots of ads for "Hurricaine")
Posted 8/5/2017 12:45 AM (GMT 0)
I'm somewhat skeptical that remicade would do anything. Ideally, you would've had a blood test while on the tnf-alpha-blockers (humura or remicade) to check your serum minimum levels and antibodies while on them. If you had no antibodies, high serum concentrations, and bad symptoms then that'd be a pretty much closed-book-case that you'd failed that entire class of biologics.

Do you have any remicade antibodies? Or humira antibodies?
Posted 8/5/2017 1:24 AM (GMT 0)
That's true iPoop, though my personal experience was different and I don't think that always is a definitive way to prove whether it will work or not. At one point my remicade level was checked and my level was very high even on the standard dose. It was felt that that was too high and reduced. When it was reduced I seemed to have an increase in symptoms despite having a normal remicade level so my dose was returned to the original dose. I know this isn't the case for everyone but considering how fast remicade works you would know pretty quickly whether it was worth continuing.
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