Remicade stopped working?

Has anyone ever had Remicade stop working, without testing positive for antibodies? I had the trough test done before my last infusion (a measure of the Remicade level at the furthest point from last infusion and a check on antibodies) and everything turned out fine. This means, my Remicade level was still at a functional strength 8 weeks after my last infusion and that I have no sign of antibodies. However, I have been in a flair for 4 months now! It seems like Remicade has just quit working after over ten years of healing me. Can that happen? Should I change drugs? These are things I will be asking my doctor, but I'd like to hear from anyone who's had a similar experience. Thank you.

Thank you. I'm afraid that more often wouldn't help since it isn't helping at all when it's fresh, but then again, maybe it would increase the total amount in my system. But you're right, it's something to consider!

Yes, it's the only thing I'm on except for a topical nitroglycerin treatment. Maybe it's time for a steroid. All I have are fissures (and for no obvious reason outside of inflammation) and it's not unbearable, but it does alter my life in a huge way. I had a huge fissure back in 2006 that Remicade healed within weeks.

Have you been on any steroids since you started flaring? I've been on Remicade for almost 7 years now, and sometimes I flare due to stress, illness, or I just ate stupidly for a few days. I just need a quick burst of steroids for a few weeks to get it under control.

If you try that, and then flare immediately after the steroids are done, then I'd consider adding Imuran or methotrexate, as well as increasing the dose and/or the frequency. After the first couple of years, mine stopped working well so we doubled the strength and went to every 6 weeks, which has worked great since. I do flare occasionally, but if I catch it right off, even a week of a quick steroid taper will get things under control.

When you say you've been in a flare for the last few months, what does that mean? Does it mean you have a fissure that won't go away? Or that you have fissures coming and going? Since you don't have more typical Crohn's manifestations, I'm trying to get a handle on what a 'flare' means for you.

Normally, if a person responds to Remicade for a good while, then starts losing response - but has good trough levels and no antibodies - that means they are simply losing response to the medication (Remicade) and would probably not respond to higher doses or to other meds in the same class (other anti-TNFs like Humira). So the recommendation would be to switch classes of meds to something entirely different, like Entyvio or Stelara.

But since your only manifestation is fissures, I'm not sure what the recommendation would be. I don't know if there's any data on whether Entyvio or Stelara are helpful for fissures or not.

So, long story short, I'm not sure what to tell you. You might have to just try something else and see if it works.

I'm curious - how did they determine the Crohn's diagnosis based on the fissures with no other manifestations? Not saying the diagnosis is wrong, just wondering...

Thanks for the explanations. Makes sense to me.

As for switching to Humira, it generally doesn't make sense after the patient becomes non-responsive to Remicade (while having good trough levels and no antibodies). But your situation is unique, so I'm not sure how much the 'conventional wisdom' applies. I'm not sure what to suggest, unfortunately.

If you are going to transition to another anti-TNF, I would strongly consider Stelara first. It seems to be getting the best reviews, and is rivaling Remicade for effectiveness. I have no experience though, so just something to consider.