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Continue Remicade or move on?

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Ulcerative Colitis
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Posted 8/24/2020 5:01 PM (GMT 0)
I have been on Remicade since March 2019. Doc moved me to 10 mg/6 weeks on August 2019 since I wasn't in complete remission and my levels were on the low side of being ok.

I have never been in what I consider complete remission though my lingering symptoms are very mild. I go 2-3x/day (my normal even in remission), no urgency or blood. But stool is not fully formed -- usually just pieces or mush. A few months ago I thought I had made it to remission but then I got a stomach bug and have never fully recovered from that. Stool tests have ruled out pathogens.

I just had some blood work done that seems to confirm that this is a simmering flare -- CRP is 2.8 (normal is <1) and Sed was 29 (normal 0-20). I had my Remicade levels checked again and the levels are very high (27.9 with no antibodies)

I see my doctor in a few weeks and will be talking with him about what to do next. I guess my choices are stay with remicade since I have such mild symptoms or move to Stelara or Zeljanz. I hate to stop the remicade since I definitely can live my life like this without UC impacting anything. But I know I have a simmering flare and that's not good.

I did just stop rectal meds last week and stool formation is actually better (go figure!). The rest of the meds I am on are in my signature (though the meds for hypertention have changed and we're still working on the best combo for that). I have tried a lot of meds (loved Entyvio -- even went into a confirmed by scope remission -- but then it stopped working) and I know there's not too many left to try. Surgery is not a good option for me -- I am one of those rare people who are very overweight with UC. Every time I try to lose weight I flare and have found that eating less healthy food helps my bowel (weird I know-- I keep hoping I can get the bowel to settle so I can eat healthier)

Anyway -- what would you do? Stay with remicade or try something else?
Posted 8/24/2020 8:08 PM (GMT 0)
If you are not doing too badly, I would remain on the Remicade as long as possible. I have already gone through them all and am at Stelara. Next stop is surgery. You don't know that any others will work any better. I would try tweaking other things. Good luck!
Posted 8/24/2020 10:05 PM (GMT 0)
My gi does not do CRP testing on his patients because he said there can be some inflammation going on in the body not related. Instead he does faecal calprotectin tests, it targets the intestines only. I would ask my gi to order this test.

If your feeling good overall I would stay with Remicade. Your stools can very well be a result of your eating habits.
Posted 8/25/2020 6:53 AM (GMT 0)
I use rectal meds on some days of the week and always have more mushy poops the next day, than on the days I don't use them - because the liquid of the enema is mixed with the stool.

Agree with straydog that crp is often not diagnostic for UC and fcp would be better.

Fwiw I had a scope confirm remission last year while still having up to 4 BMs a day. My main symptom of flaring is abdominal pain.

I'm on xeljanz and its been great but as others have said, if you're not really flaring then stick with remicade.

Maybe a strong probiotic like vsl3 would help get things back into balance in your gut.
Posted 8/25/2020 10:45 AM (GMT 0)
If not seeing blood stick with it and figure out a solution for the IBS portion. I was the same way but had a clean scope. I was out on lexapro for anxiety and it helped tremendously. Having said that after 1.5 years of a beautiful remission, I’ve had a small flare in February of this year and am in another one now. I’m on a short course of prednisone but if the next remi dose doesn’t turn things around or if I can’t increase the dose due to high levels I have to switch. I’m praying I can stick with Remicade! My calprotectin was high this flare! Gosh CC I am with you .. these meds suck
Posted 8/25/2020 2:59 PM (GMT 0)
It sounds like you are a very good responder to Remicade, even though it may not have gotten you to a perfect remission. I do recommend you check fcp (it’s possible, as others have said, that your slight raise in CRP is due to non-UC sources).

If fcp is in fact elevated, and/or a scope confirms some UC activity, I still wouldn’t give up on the Remicade just yet. Have you ever been on Imuran/6MP? If you tolerate those meds well, they can provide a safe an effective synergistic effect in addition to a biologic like Remicade. I personally believe that I benefit from such a concomitant therapy — with remicade alone my remissions seem to be far more fragile. While the primary purpose of low/moderate dose Imuran/6MP with Remicade would be to boost levels and prevent antibodies, I think there’s evidence of an effectiveness beyond that mechanism of action, especially if you’re able to tolerate full dose concomitant therapy well.

No one likes the extra meds, I get it for sure.... but the unfortunate reality is that if we get a response as good as yours to a drug, even if it’s not perfect, it is usually in our best interest to work with it before we move on. There’s no guarantee that the next try will be any better - and it could be worse. Switching back to Remicade once you’ve come off of it also is risky business, as you can easily develop antibodies in the off time.

I hope that a long and durable remission is in your future. It sounds like you are oh so close!
Posted 8/25/2020 9:07 PM (GMT 0)
Thanks everyone. Seems to be a general consensus to stay with remi. That's what I was thinking too. I was in really bad shape before I started remi -- severely anemic (had to get blood & iron transfusions), high dose prednisone, BM 20x times/day, urgency etc. It has given me my life back. Definitely don't want to go back there.

Question -- since my remi levels are so high do you think the problems could be from too much remicade? Like maybe lower the dose to 7.5 mg? Or would you leave well enough alone?

I don't generally have FCP tests because the closest lab is 20 minutes from me and they told me I have to get the sample there within 30 minutes. Makes things rather difficult. Other stool tests can be refrigerated but the lab told me that the FCP test has to be fresh.

I swing back & forth between thinking this is a flare and thinking maybe it's IBS. At first I was sure it was some type of pathogen (started with colon cleansing diarrhea -- like a scope prep) but the diarrhea went away after a few days and the stool tests were all negative. Just that the fully formed stool I had before has never returned since then.

tiredofallthispoop -- hope Stelara works for you. I have heard good things so fingers crossed for you.

Susie -- usually if I eat a lot of fiber things get very loose (I said I am weird lol) so I am careful about that. If I eat too little I get constipated. It's a crazy balancing act.

Countess -- I hope remi kicks back in for you!!

Rocket Man -- I can't take Imuran or 6mp. Tried both and had liver issues with both sad

Will let you know what the doc says when I see him on 9/3. Wow! That's next week! Does anyone else have problems with the passage of time these days? One day seems the same as the last since I work from home now and don't really go anywhere. It's like I am stuck in pre-covid time waiting for this all to go away.
Posted 8/26/2020 7:26 AM (GMT 0)
That's odd about needing to get the sample there in half an hour (also pretty unreasonable, surely some patients live further away than that?). Besides, it's not like anyone is checking....Fcp is supposed to be stable at room temperature for a long time. My hospital lets us send the samples in by mail, although I've never done this as I wanted the results as soon as possible.
Posted 8/28/2020 10:19 AM (GMT 0)
I thought the same thing poopydoop. I wondered how so many people get that test all the time. I will check on that again.
Posted 9/5/2020 3:40 PM (GMT 0)
For now we are just going to stay with Remicade at 10 mg/6weeks. He said if things get worse the next drug he recommends is Xeljanz. He said this may be what my new normal is.
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