Remicade Not Working - Next Steps :(

It's been a few months since I've posted, because I started feeling MUCH better on Remicade - we thought I was basically in remission.

Then, I did something very foolish and went back on birth control pills, something that we think bothered my UC in the past, but I was in remission and we thought it would be okay.

The pills (LoSeasonique) were a disaster and within weeks I was having a bit of bleeding and cramping again. Stopped the LoSeasonique and GI decided to bump up Remicade to every 4 weeks. However, I'm 3 weeks since my last infusion, and have bleeding again, a bit of mucus, and some cramping. Still at only 0-2 movements per day, but worried. Calprotectin came back today well above normal.

Then - my liver enzymes (AST/ALT) have been climbing with every infusion. Liver workup has shown positive for anti-smooth muscle antibodies, high ANA titer, etc.

So going in for a flexible sigmoidoscopy next week, and a liver biopsy the week after. My next scheduled Remicade is a week from Tuesday, and we're likely going to start Entyvio with steroids as a "bridge" to help me through the time it takes Entyvio to work. I can't stand the thought of going back on prednisone.

Proactively switching back to a bland diet. GI said I can start Cortifoam this weekend if I'd like. Have been under a lot of stress in past couple of months, so now on Zoloft for the past couple of weeks, which will hopefully make this all a little more bearable.

Any thoughts? Please say nice things about Entyvio. I'm so worried about having autoimmune hepatitis and having to switch off the Remicade...

FlowersGal, thank you! I'm so happy to hear you found success with Entyvio!

How well did the Uceris foam "tide you over" until the Entyvio worked? Any side effects from that? Hoping to avoid going back on Prednisone, which made me super miserable.

You literally made my night with this post, FlowersGal! I started the Zoloft because this whole thing made my panic disorder much worse and I couldn't treat the attacks without medication. The Zoloft hasn't fully kicked in yet, but it's making a difference after just two weeks.

Thank you especially regarding the Uceris foam. Hearing that it can help bridge the gap is very reassuring. I can't just stop doing everything for three months again while waiting to feel better...hopefully the Uceris will help!

Thanks, in this case I feel comfortable with the biopsy. AST and ALT have been climbing since April, and they did a full workup, which came back with high positive titers for ANA, anti smooth muscle antibody and f-actins, all of which point to autoimmune hepatitis. Whether or not it’s Remicade induced, we don’t know, and the biopsy will definitively diagnose AIH as well as tell them the extent of the damage. It will also allow them to identify (and stage, if needed) primary sclerosing cholangitis (which is hopefully not an issue). So I’m okay with the biopsy. I had a liver biopsy in my early 20s when I was being evaluated as a living liver donor for my dad, and it wasn’t a difficult procedure.

Any thought of increasing the dose of Remicade to 10 mg/kg? My son had good but inconsistent results from Remicade. We increased the dose (and added a few others meds) and it was a huge improvement.

Have they done a test to see if you are at therapeutic levels for the aren't? There is a test, which usually insurance doesn't cover, that see strhe level in your blood. If it's not working, they can adjust the Remi dose.

I unfortunately wasn't responding to Entyvio and then tried Remicade which also didn't work. But, it's worth giving it a shot for you. My doc said some people are just resistent to that type of treatment and once one doesn't work, the others may not either (including Humera).

Do you know how early you can start the Entyvio? It does take some time for it to work so it does make sense to have a back up plan like the others suggested. Good luck which ever route u decide to go!

I just wanted to say sorry you are having to go through all that again..when I read other peoples stories it reminds me of what a lot of us have to go through...it's exhausting...best of luck!

You guys. THIS is why this board is so great. Thanks to everyone for responding - I felt much less freaked out coming back to this board and knowing I'm not the only one dealing with this crazy illness.

So - I think there's still hope for Remicade. NiceGuyEddie's response got me thinking about my Remicade dosing. Prior to last week, our plan was to increase frequency to every 4 weeks and see how that went. And I've only had 2 maintenance doses of Remicade so far, and am really hesitant to give up on the drug so quickly when I had a great response initially.

Something about the liver enzymes kept nagging at me, so I went back into the historical graph of past results and correlated that with my diet/meds/symptom diary. Lo and behold, there were two occasions (one right after all of my loading doses) where my liver enzymes came back down to normal, and both correlated with two-week periods where I had eliminated gluten from my diet. (I reintroduced it in May).

My mother and brother both have celiac disease. I had a negative genetic test 8 years ago but they are going to recheck to be certain, and my GI now suspects I have non celiac gluten sensitivity. Interestingly, I stopped consuming gluten on Friday night, and by yesterday my bleeding had stopped completely - still none today.

So I talked to my GI, and we agreed to try another Remicade infusion (next week - that will be just over 4 weeks), Cortifoam if needed before then, watch symptoms and stay on a gluten free diet for a few months so we can assess if there's a real change.

And we will still do the liver biopsy regardless, since tests came back strongly positive for autoimmune hepatitis.

Fingers crossed that the diet change + more frequent infusions will help, and that all will be okay with my liver.

Fletch- so happy things are moving in a positive direction for you! I hope the infusion helps get you stable again.

Really interesting that even if you aren't positive for celiac you can still be allergic to gluten. Hmmmmm.

Thanks, Totes, Plucky and iPoop!

GI agrees the non celiac gluten sensitivity is a very tough diagnosis and rare, but also said it's a possibility given the correlation with liver enzyme tests, GI symptoms and our family history of celiac disease. I hate giving up any food (!) but am willing to try if it helps the Remicade to do its job.

Glad you have a plan! Hopefully you won't have to stop Remicade.

As far as the gluten-sensitivity test, I read somewhere (might have been in the "Wheat Belly" book -- great book about gluten, btw!) that unless you are consuming gluten before and when you have the test, it might come out false negative. I don't know if that's true or not, and I'm not suggesting you eat gluten before your test, just pointing out a possibility.

Glad you figured out (hopefully anyway, we all know how this goes sometimes) that gluten is/might be contributing to your problems.