Deciding whether to continue remicade

Hello, I'm new here and am looking for a little guidance. I got diagnosed with Crohns back in 2001 at the age of 23. It started with an abscess turned fistula etc. long story I was trying to have recto-vaginal fistulas repaired with active disease and surgeries didn't work, only made it worse (having leakage) after the fact. I stopped going to Doctors altogether until I had my first and only real bad flare. That's when I found a GI doctor (had only been under the care of surgeons) and he put me on several meds to control disease and settle my infections etc. eventually I started remicade and did that a few times until I got better and decided the cure was worse than the disease. It's been over a decade since I've been on any medication. I went and had a colonoscopy and MRI done in 2013. I have the same stricture and fistula (that I've learned to deal with) that's been there since Dx. Doctor and I decided that I was feeling fine and have been managing so I didn't need any treatment. My main struggle is dealing with diarrhea days and my fistula. If I can't make it to the bathroom....I can't hold it and it gets messy. But I figured that mess happens every now and then and it's the struggle I have to deal with. Other than that I really don't deal with other issues, I eat and drink what I want and deal with the occasional bad days of running to the bathroom. Last year my 9 year old son got diagnosed with Crohns, perianal disease as well and he has responded to remicade. After seeing his response I thought about it and decided maybe I could get the diarrhea under control and not deal with the hassle of running to bathrooms and pooping myself. I went to my Gi he looked at my test from 2013 and decided we can start remicade again. I had been warned by others about the antibodies risk since I had done remicade in the past and I had the Prometheus test. That came back negative and the rest of my blood work came back fine as well. So on 3/31 I had my first infusion. I was surprised that I was in and out in under 2.5 hours, I remember it taking longer back in the day and my sons infusions are also much longer. I didn't have any adverse reaction immediately, at a little over a week though, I had a delayed reaction in which I had acute and fairly severe joint pain and stiffness. Started with my right knee, which I initially attributed to my previous acl surgeries. I noticed it was odd though when for no reason at all it become stiff, swollen, and painful to the touch. That night from one moment to the next, my wrists and fingers, neck, jaw, etc became stiff and painful. I went to hospital and they gave me steroids in an Iv and some pain meds. That was this Saturday. I called office today and doc says that's not necessarily an indication of antibodies and says I should continue with remicade while dosing with prednisone 20 mg day before, day of and day after. PA said since I will eventually be going every six weeks, the steroid use at that dosage should not be a concern. I stared reading and of course you see all the horror stories and again I remembered why I chose to stop infusions back then-is the cure worse than the disease-in my case specifically since I've been managing for over a decade with no meds. Sure I have the risk of flaring up and needing meds at some point, so my question is, shouldn't I wait to cross that bridge when I get there? Worry about remicade and steroids with the remicade and all those possible side effects when I really have no choice. I've never experienced joint pain and stiffness before. Even today, my hip has started to hurt and my right hand and wrist is still bothersome. I've also been reading all the horrible things that have happened after remicade to some people on other forums that I was browsing and its freaked me out even more. Particularly drug induced lupus and other stuff I saw. Any thoughts would be helpful since I'm so undecided on how to proceed this Thursday since I'm scheduled for second infusion. Thanks.

Staying informed is good, reading up on rare side effects...not so much. Try and avoid reading frightening articles; there's a lot of information out there and it can be pretty overwhelming. about the remicade, you're certainly right about the antibodies, starting and stopping remicade is not advised as it increases your chances of having an allergic reaction to it. In most cases, once the body develops antibodies against remicade you won't be able to go on it again. Definitely something to consider as remicade is really much too valuable to discard over mild side effects or potential complications imo.
As to 'crossing the bridge when I get there', I can understand the logic, but the disease doesn't always work that way. For a while I treated my crohn's that way and I will say the flares during that period were FAR worse than the flares I get when on long term maintenance meds.

And just now my left ankle is swelling and getting tender quick. Ugh.

I quit Remicade after two years on it because I developed severe chronic constipation, had constant respiratory infections and the benefit of the infusions was pretty minimal (I was in a flare the entire time on it). By the end, I had also started to build up antibodies, so it was pretty clear it wasn't going to have much benefit for me.

They're*^* typo in previous post.

And @gods love in action, thank you for that information. Definitely need to look into that.