How determine Remicade is ineffective?

There's a few ways they can tell you've failed remicade once you've completed the initial loading doses:
1.) They can do another colonoscopy and compare before/after results.

2.) They can do the Remicade blood concentration and remicade-antibody blood test, 48-hours before your next scheduled infusion.
2a.) You've failed if there's no antibodies, a high concentration of remicade, and your current UC symptoms are horrible.
2b.) You've failed if there's high antibodies to remicade.

Is remicade and prednisone the only medications you are currently on?

Just a heads up, even if they approve Entyvio and start that, it can take around 12 weeks to start working. That's an awful long time with accidents...

I've heard xeljanz is much faster than entyvio. Had you considered xeljanz for its speed (plus it's an oral pill, so no needles or IVs needed)?

Not sure if there's any standard on the clearance-period between meds, seems variable and sometimes non-existent.

Has Cyclosporine, Tacrolimus, or even methotrexate been mentioned? All potent rescue medications (strongest when given via IV) that might tide-you-over until the new meds are started. Sounds like your quality of life is crap due to all of this UC crap.

Post Edited (iPoop) : 7/31/2018 8:28:16 AM (GMT-6)

Enemas are a good addition, but you're right, your situation is not likely to be ameliorated with them alone. Sounds quite severe. If you're on remicade and prednisone, and still having accidents, that is not a great sign. I knew I had failed because I tried a double dose and moved the infusions closer together, and I was still unstable. I wasn't on prednisone though. I was actually sick of taking drugs and trying this and that though, so my tolerance for all of it had worn thin. I know if I were in your shoes, I would want an answer, but unfortunately with this illness, there aren't that many treatments beyond remicade, so it's may be requested to give you a higher dose of remicade or closer infusions. It can take a long time to get through treatments at this stage, and it can take a while to see results. I tried to be patient, but ultimately, I wanted to stay off prednisone more than anything so I opted for surgery. iPoop may be right, xeljanz may be a better option vs entyvio simply because it works faster, and you're struggling pretty badly if you need diapers on a daily basis.

Have you had stool tests? How about cyclosporine (same as Tacrolimus) to rescue? Maybe that would give your body a chance to heal so the biologics have a better chance of keeping the inflammation at bay. MTX has no proven efficacy with UC patients so I wouldn't put my eggs in that basket. It can be good for preventing antibodies to some of the biologics... CBD, while hopeful, I don't think anyone knows if it's doing anything good, or bad, with UC.

Great info. So blood tests show no Remicade antibodies after 3 infusions. Comments on the enemas make total sense. My CBD arrives this week, so I'll let you know; my hope is that it helps me *lower* the amount of prednisone - certainly not expecting a panacea... who knows... but! I will let y'all know. nososickly girl - I did have stool tests a few month ago; the $1000s work up testing everything from parasites to white blood cells (starts with a p or a k in the name - can't remember) - no infections, no parasites, all good. I'm still in shock that with seemingly no family history (that I know of as most are dead already) that a simple Clindamycin dose for a staph infection placed me on this long term journey where I can see why people opt to ask a surgeon to "just get this darned colon out of me". Definitely not there yet as I am only 8 months into my journey

"So blood tests show no Remicade antibodies after 3 infusions."

Right, the second and equally important part of that test is your minimum blood concentration of remicade just prior to the next infusion. If you have zero concentration of remicade, then increasing dosage could help dramatically (go from the initial 5mgs per kilogram to 10mgs, and/or increase the dosing from the standard 8 week intervals to 6, or 4 weeks). A max of 10mgs per kilogram every 4 weeks. Some of us just need more remicade than others due to our disease severity and faster body/blood clearance rates.

Again, a high concentration of remicade and no antibodies is a failure of remicade and likely all tnf-alpha blockers (so forget humira/simponi).

All depends on what your test said.

Post Edited (iPoop) : 7/31/2018 9:33:07 AM (GMT-6)

tiredofallthispoop said...

I was encouraged by the studies on indigo and have ordered some isatis cooling. Will let you know if it helps!

tiredofallthispoop - I bought some isatis cooling. so 90 pills and they say the dosage is 3 pills between every meal - does that sound right? I mean the bottle will last 10 days if that is the case... Have you used any of this yet? Thx

Hi Nealzy,

I just got mine today. As with many supplements, I am going to take one a day, despite the dosage they advise. I do this with psyllium (husk & seed), calcium/magnesium, and many other things. I find that I am pretty sensitive to medication so a little goes a long way, and if I think I need more I can always add another and see what that does. I think of it like driving a car and instead of stamping on the gas pedal I am trying to adjust my speed by moving my foot just a little bit up or down. Also, I am on so much other stuff right now that I wonder what effects are from what anymore.... But, here's hoping!! I figure I should have the Remicade mostly out of my system by mid-September and may actually start to resume normal life. Have you tried the CBD oil yet? I am trying to register with my state to obtain stuff by prescription. I would happily get off pred if I had a painkiller other than Tylenol. It's the body pain that did me in. Well, the gut inflammation wasn't helping but it was truly the lesser of the two.

Post Edited (tiredofallthispoop) : 8/1/2018 10:51:21 AM (GMT-6)