Flare? CMV?

[Rose09]

hello all,
I have Crohn's Colitis, diagnosed 2012 on Lialda and Humira. Last flare was january 2019 - very bad flare and started Humira in April 2019....No flares since and been quite well. Started with the dreaded pain and D 12 days ago and have seen every kind of stool since (sorry TMI) total water with a chemical smell, soft, semi normal, mucus, loose, some slight blood. Pain started as severe but has gradually lessened over the last couple of days and watery stool seems to have reduced.
GI Dr ordered labs etc and all ok except Calprotectin level 695 (no surprise) and Humira level 9 , so a little low but still ok if above 7.5.
Anyway, the Dr called me today and is talking about increasing Humira to weekly but wants to rule out CMV in colon by taking biopsies via a flex sigmoidoscopy.

I am really not keen. I have had plenty of scopes but at the moment I just. don't. feel. like. it.
My flare symptoms are no worse and if anything a little better so I guess i don't feel the urgency to get a scope. I've not had a fever or any nausea. I usually feel ok by around 1pm each day and have no real issues until I get up in the morning.

Does it sound like CMV for anyone with experience of it?

Is anyone else on Humira weekly and if so why?

Thank you so much for any advice!

 

[crohnsinct]

Funny you should ask. My daughter is having a scope to today for pretty much the same reason. She has Benin a flare of sorts for 4.6 years though. She had a rough summer last summer in the hospital for a month. Ever since her doc has been wanting to rule out every other things. The latest CMV. He thought CMV because last summer she tested positive for mono (although she felt fine), her WBC's and neutrophils were low and her fecal cal went from 460 to 1,125. He was concerned the sharp increase means CMV.

She had a blood test for CMV and it came back negative but GI says it has a very high false negative rate of 50%. So that combined wit the need to really know what is going on here (he likes to also say IBS) means scope today.

You could try increasing Humira to weekly. Our GI says Humira doesn't make CMV worse and no need to hold it with CMV suspicions. If that doesn't fix it then maybe flex sig or total colonoscopy.

My daughter is not on weekly Humira because she is also on monthly Entyvio at 600mg, and Entocort. There are plenty of people on here who are on it weekly though. Usually if Humira helps at the beginning of the cycle and wears off over the two weeks that is when they move to weekly but if it never makes anything better and you don't see that cycle it is more likely a non response.

Good Luck. I will let you know if her CMV biopsy is positive.