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Do I just assume I’m going to fail Remicade as well?

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Ulcerative Colitis
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Posted 8/26/2020 2:43 AM (GMT -5)
Hi everyone,

So I’ve been on 5mg/kg of remicade since beginning of February after being on humira the previous April - December. Humira worked pretty well - got me to the point of having normal FCP tests etc- but caused me to have issues with itchy skin and then by 6/7 months on it, I had already started to produce some antibodies and it started to lose effectiveness and I went into a small flare (fcp = 100).

I’ve had a similar response to remicade whereby after a few infusions, my stools were formed to the point they were almost too hard if you know what I mean and aggravated a fissure which also wasn’t great. This effect would gradually wear off as I was due my next infusion but then happen again after each infusion. However, I’m now 9 days from my 7th infusion and I’ve noticed with this infusion although my stools are formed, they have not been so hard and I feel like they are going slightly looser again. Still don’t have any blood or mucus and going 1 x a day but I just get this bad feeling. I guess I expect it to fail/get antibodies again.

I’m also 29 weeks pregnant with my first baby so who knows what that’s doing to my bowels....
I still get niggly pains most days which I always link to UC rather than something I ate/being pregnant/IBS etc.
I’m just getting this feeling that because we’re around the same time frame that humira started to fail, that this is going to fail too and I’m dreading going into a flare when I’m about to have my baby.

Any thoughts? I’m also on 25mg mercaptopurine + 100mg allopurinol every other day + 2.4 - 4.8g mesalazine depending on how I feel.
Posted 8/26/2020 10:42 AM (GMT -5)
It could be that you are not responding to Remi, but it could also be the pregnancy that is aggravating things. I had a lot of hormonal shifts around that stage when I was pregnant, so it could just be hormones. That variable is a tough one, there are so many changes in the body when pregnant.
Posted 8/26/2020 10:59 AM (GMT -5)
Thanks, it’s so hard to know what is causing what. I mean I think I have responded to Remi well and I don’t know whether it’s just my paranoid self letting doubts creep in...
Posted 8/26/2020 11:05 AM (GMT -5)
Ribbon, just my 2 cents, 1 bm a day, no blood in the stools, Remicade appears to be working. Relying on having perfect stools daily is not a predictor of a flare. I can have full blown diarrhea for a couple of days & then things settle down. I had to learn to stop stressing myself out & stop trying to micromanage every detail, it was exhausting & set off anxiety.

If I remember correctly you live out of the country & they have a different protocol than what we have in the states. Here in the states the infusions can be moved closer together or even an increase.

Take care.
Posted 8/27/2020 3:34 AM (GMT -5)
Thanks Susie, I think you’ve hit the nail on the head - I definitely need to somehow stop obsessing over small details! And yes you remember correctly - I’m near London. I think they can also increase the dose and/or frequency here depending on what my blood results show, I guess I’ll see how it goes.

All the best
Posted 8/28/2020 7:11 AM (GMT -5)
I flared mildly at the end of my last pregnancy. I was on humira before and after the pregnancy and had been in remission and doing well on it. After I had my baby, I did a quick prednisone taper and have still been doing well on humira for over a year now. My doctor said not to make any drastic medication changes while pregnant if it’s not completely necessary. Hopefully you’ll start to feel 100% after you have the baby. Good luck!
Posted 9/14/2020 3:24 AM (GMT -5)
Just an update... had my 6th remicade 10 days ago and things haven’t really changed although I’ve notice past few days that stool seems to be harder and I’ve been having soreness when I go... not sure if this is something like a cut/fissure or inflammation? Anyone know? Still waking up every morning with some pain which randomly disappears as soon as I get up out of bed. I don’t really know what to do.
Posted 9/14/2020 4:25 AM (GMT -5)
Hey I would try not to stress out. Remember stress can start a flare! Maybe try making some dietary changes so they don’t play around with medication too much while you’re pregnant or maybe try adding a probiotic (make sure you get the okay from your obgyn first)
Posted 9/14/2020 4:27 AM (GMT -5)
Did you get some bloodwork done lately? If not check your CRP, ESR level. Pregnancy can cause digestive issues to anyone even those without IBD
Posted 9/14/2020 4:34 AM (GMT -5)
Thanks. Yeah i had blood work done when i had my infusion, they don’t routinely tell me results unless there’s an issue so asI haven’t heard I’m pretty sure CRP etc would be fine. Unless I’m in a really severe flare CRP tends to be normal. Yep true i know pregnancy can cause a variety of digestive issues
Posted 9/14/2020 7:41 AM (GMT -5)
I’m sorry you’re not feeling great at the moment. Regarding blood work - I make sure to collect all results and document them. This allows me to work with facts. I do the same with many other physiological metrics. I found that the information helps me with my emotions as I can see trends, it’s also puts me in a much better position to advocate for myself.
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