Remicade

If you have already been on Remicade it's probably not an option. You can't stop it and then re-start it, regardless of how it's working. However there may be other biologics that are options. I have had very good success with Remicade but was never on it before I started it for pouchitis. You may want to discuss Stelara and Humira with your Doc.

From my understanding it does increase some more risk for side effects since I've taken it in the past but it doesn't necessarily prevent me from taking it again. After the scope the GI said this is clearly not what you had before i.e. pouchitis is different than UC so Remicade not working before is irrelevant.

It not working before is not what the issue is, stopping and then restarting it is.  Speak to your GI about that, I did not think you could stop and re-start it, regardless of what it was used for previously or the previous impact.  I had read that the efficacy of Remicade is reduced if it it is stopped for any period and then resumed.

Read this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6883732/

"The traditional teaching was that if a patient’s biologic therapy was interrupted and his or her drug level dropped too low, restarting the therapy carried a high risk of developing antidrug antibodies and, therefore, losing response to the therapy. Thus, the dogma was that once the patient started the therapy, he or she needed to stay on it and be adherent to the maintenance regimen. The current thinking is that when a patient has a drug holiday, whether it is intentional or unintentional, and the drug level drops to zero in between dosing, the need to restart therapy is based on 2 factors: clinical recurrence of the disease (ie, the patient has a relapse and needs to be treated actively) or, in the modern era, subclinical recurrence (ie, a doctor is monitoring the patient and detects inflammation before symptoms develop). Those are the times when treatment needs to be restarted, whether that means going back to a therapy the patient has already been on (and from which the patient is currently on a drug holiday) or moving to a new therapy (possibly with a novel mechanism of action). This decision should be discussed very carefully."

The bottom line is a high risk of antibodies developing, and antibodies is not a "side effect", it is "treatment is done and over", as in "kaput."

I read most of it. I'm still a little confused. It's clear that people are able to restart but the only case where it's not recommended is if anti drug antibodies develop.

That's the point. They develop in a great many cases after a restart, and then it's all over and on to plan B. Meanwhile you have gotten worse and still need a plan B.

It looks like the thinking may have changed on this, and that restarting Remicade can be a reasonable choice. It was originally considered a questionable (or even “forbidden”) choice. Your doctor might (or might not) want to test for anti-Remicade antibodies. If Remicade already failed you, though, even in different circumstances, a different drug seems like a more promising place to start, with less hassle.

Sorry you are going through this! Are you open to getting an ostomy if things do not work out???

The last thing CoolGuy needs to hear about is the possibility of getting an ostomy. I am sure there are many avenues for treatment before that possibility.

@Former Member posted:

The last thing CoolGuy needs to hear about is the possibility of getting an ostomy. I am sure there are many avenues for treatment before that possibility.

Totally agree. There are absolutely many treatment avenues and CoolGuy does not need to be discouraged into thinking he needs to get an ileostomy.

Everyone is different, I tried remicade right before my surgeries and remicade after when I had pouchitis. Second time around remicade kicked my a** as I had some weird effect that kinda left me shaking like crazy. Before that I used to be on humira, it was wonderful and worked so great until I became resistant to it. Right now I’m on entyvio and so far so good albeit the current situation I’m in, getting scoped to figure out but feel free to PM me if you wanna talk

@Edie A. posted:

Everyone is different, I tried remicade right before my surgeries and remicade after when I had pouchitis. Second time around remicade kicked my a** as I had some weird effect that kinda left me shaking like crazy. Before that I used to be on humira, it was wonderful and worked so great until I became resistant to it. Right now I’m on entyvio and so far so good albeit the current situation I’m in, getting scoped to figure out but feel free to PM me if you wanna talk

I hope Entyvio works out for you! I am happy to hear you are okay

Thanks for the replies. Yes, I still have several treatments options left to try before I were to consider something like an ileostomy. I've only tried Entyvio. I have a follow up appointment with my GI in early January. Curious what route he wants to take.

I'll keep everyone posted; thanks again for your support and advice.

@CoolGuy posted:

Thanks for the replies. Yes, I still have several treatments options left to try before I were to consider something like an ileostomy. I've only tried Entyvio. I have a follow up appointment with my GI in early January. Curious what route he wants to take.

I'll keep everyone posted; thanks again for your support and advice.

You are welcome! Definitely let us know what happens.