Remicade

If the Humira wasn't getting from under the skin (where it's injected) into your blood, the Remicade might work better. Remicade is injected directly into a vein.

So I'm told Scott, thanks for the reply.  I suppose that Humira and Remicade are basically the same thing with the main difference being the manner in which they are taken.  Please correct me if I'm wrong...

They are both biologics, but they're not really the same drug at all. I hope the Remicade works for you!

While they are not the same drug and are administered differently, they are both TNF blockers which you just may not respond to. I was on Humira, took 5 total rounds...did great for my gut but developed nervous system issues, specifically neuropathy.  Therefore, TNF blockers are not an option for me. Will be trying Entivyo (hopefully) once my appeal with the insurance company is approved since they denied the medication. BTW, I had my surgery in 1999 and am having inflammation issues at the inlet to the pouch. Hopefully you'll find the right medication that helps.

I take Remicade 900 mg every 6 weeks plus rotating antibiotics. My next infusion is May 25. I started it in November 2015 and it has helped which has been proven through scopes. But hasn't totally cleared my inflammation and Doc has told me it may be as good as it gets which is good enough.

i take methotrexate and folic acid and you should be taking something with Remicade to promote renal retention.

i just wanted you all to know that Remicade now has a test that they do a week before your next infusion to check Remicade levels. They give you a freezer pack and a kit to give the labs where you go for your blood work. I was instructed to put bag in my freezer and a week before my next infusion take it and the kit to Quest so they can draw blood and send it to Remicade so they can check my Remicade levels. I am not sure if they are doing this because newer and cheaper Remicade substitutes are coming on the market but it's a free service Remicade is doing and it can only help if you somehow aren't absorbing or retaining the Remicade. Presumably they will boost my Methotrexate levels if Remicade levels are deemed low.

Good luck with your treatment!

I too am on Remicade/methotrexate combo for just over a year. While I feel good, remicade thus far has only improved the terrible inflammation in my pouch by 10-15%. I have checked my Remicade levels three times (as CTBarrister describes above) and all 3 times my drug levels are very low. The doc would like to see them double. With that, she has increased my Remicade milligrams from 5, to 10 last October, to 12.5mg this month. I have terrible inflammation in my pouch so we are hoping to see more results under the scope, but again I'm feeling fine. 

CTBarrister- might you know why your doc would adjust your methotrexate dose instead of the remicade dose? my doc did the other way around and didn't mention adjusting the methotrexate. It's something I'll have to chat with her about. 

The Doc did not adjust my Methotrexate dosage- I am just speculating that he might, because he has already increased my Remicade from 400 to 900 mg and the frequency of my infusion times from 8 weeks to 6 weeks.  Not sure he can give me any more or more frequently without me becoming a Remicade blow-up doll. Methotrexate has been 12.5 mg weekly since day 1- which he told me was a fairly low dosage.  If my levels are low I don't know what he will do.  I am going for that Remicade level test today!

I just had Remicade trough and antibody tests done and they were to be done a couple of days before or up to the morning of my next infusion. I did not have to bring a freezer pack, but my Kaiser lab said it was sent out to Utah. 

So far, 500mg dosing works well for my pouchitis without the need for antibiotics, but my arthritis is not responding as well.

Jan

My Remicade test just came back showing I have a "therapeutic level" according to my GI doctor.

With regard to my pouchoscopy on May 22 and subsequent Pathology, his report to me states as follows: "as you know, there was evidence of active Crohn's Disease within your pouch, but no different than what I had previously seen. Biopsies confirmed this. The polyp that I removed is a benign inflammatory polyp with no precancerous potential..........overall, this is a good report for you."

Not trying to scare you and I'm sure this doesn't happen to everyone, but I took remicade for 6 years and the last time I took it (7 years ago) I ended up in the ICU with severe uncontrollable bleeding in my J-pouch. I stopped taking the remicade because it was doing nothing and had flu like symptoms for weeks, then my pouch broke open, started to bleed so my doctor put me back on it and it made the bleeding much worse right after it was infused. It turns out I was taking it all that time for nothing and I don't really have Crohn's disease but I do have inflammation in my pouch and have had very frequent bowel movements (13 a day average) ever since the surgery was done.  I would be careful and get a second opinion because remicade might do nothing for you just like the humira and its very expensive and risky.

I'm surprised by the number of responses here from people still having to use Remicade or Humira for pouch inflammation and/or active disease. I've recently had a subtotal colectomy because of pancolitis after 10 years of Remicade. I'm hoping to get a j-pouch but can't imagine going through all that and still having to take biologics or any drug for that matter. Why is anyone still having flares? Is it Crohns related? My path report showed no signs of Crohns.

That's a good question jfill21. I had a test done that showed no signs of Crohn's then 4 years later another test done that showed signs of inflammation in my J-pouch. It was probably pouchitis, which is a very common thing years after J-pouch surgery. My doctor also said it's slightly possible that I have Crohn's or the inflammation is just left over lingering from having ulcerative colitis. It can be very hard to get a definitive answer from a doctor when the two diseases can act very similar to one another.

I'm going to Cleveland Clinic for a consultation. Hope they can tell me a j-pouch is the right way to go. So far, I've adapted to the end ileo but would rather not have to deal with the inconvenience but only if the risk is worth it. 

If you have no signs of Crohn's, chances are pretty good that a J-pouch would be the right option. A J-pouch is not fun or easy to live with but I still like it better than having an ileostomy, even being one of the unlucky ones with a poorly functioning pouch, it's less depressing.  Hope everything works out for you Jfill21.

I forgot to mention Jfill21, the reason I was put on remicade to begin with wasn't because I had inflammation in my pouch. After my first surgery I had blood pockets in my pelvis region, which had to be drained out by drilling a hole through my butt cheek. Then my staple line around my anus broke open and it formed a fistula with the hole that was drilled. So my doctor was very ignorant and thought because I had a fistula it must mean I have Crohn's, so he put me on remicade. That's why it's very important to have a good doctor. People were telling me these doctors were good but I disagree after they almost killed me. So this was a special case and you probably won't get put on remicade if you have a J-pouch put in.

Deve,

My operative diagnosis is Crohn's and not pouchitis but the distinction is without any difference at all as the treatments are all the same. It's inflammation. It is what it is and don't get caught up in the trap of worrying about diagnosis. I developed inflammation in my ileum above the Pouch long after J pouch surgery. It's probably Crohn's but it doesn't matter. My treatment has remained the same and I seem to have it under control. I have controlled it since 1994 and therefore one with Crohn's can live with a J Pouch and I am living proof.

I never was on biologics prior to colectomy. A decade post colectomy I developed enteropathic arthritis and was started on biologics, going through Enbrel, Humira, Simponi, and Cimzia. More than a decade after that, I developed chronic pouchitis, and I was switched to Remicade and Imuran. 

I have not been diagnosed with Crohn's, but like CT explains, it really does not matter. Just doing what is needed to remain functional. By the way, I have been fine with all these years of biologics, and I am closely monitored.

Jan

I had my J-pouch surgery in 2010.  For the first  5  years I had a hard time with it always getting pouchitis and on antibiotics.  I have learned what to eat and not to eat.  During that time everyone here was very helpful and still is.  I still can not gain any weight and have problems but not like before.    My gastro never mentioned going back on  Remicade  after my surgery.  Maybe because the remicade didn't help me before the surgery.   I was on it for 2 years.  For the ones that went back on remicade after having J-pouch surgery were you able to gain any wait and did you feel better?

Actually yes I gained a lot of weight back while on remicade, maybe about 60 pounds. Now I'm very skinny not because I don't take remicade anymore but because I have an anal structure.