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Just started Humira for flare that won't end

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Ulcerative Colitis
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Posted 3/3/2021 8:46 AM (GMT -5)
Hi everyone,

Figured I'd post just to see if anyone has any advice. 50 years old. I've been in a flare for the past year and a half which I can't kick in spite of several pred tapers, constant oral (Apriso) and rectal (Canasa and enema) mesalamine. I finally was approved for Humira and am roughly 3 weeks into that treatment. Unfortunately, since I started Humira, I'm pretty sure my symptoms have actually gotten worse. I know that Humira can take 8 to 12 weeks to see improvement but the fact that things have gotten a bit worse is a discouraging kick in the teeth. Especially with the buildup of what an f-ing amazing miracle drug this allegedly is.

Current symptoms are many small BM's in the morning (3 to 5 typically). Funny thing is, they are formed and usually cracked which is almost indicative of constipation...but accompanied by watery mucus. Little to no blood. But urgency, bloated feeling, gurgling, gas...the usual stuff. Then one or 2 more BM's the rest of the day, also with mucus. No diarrhea.

I'm sort of at my wits end not sure what to make of this. Should I write off the Humira? Is it too early to tell? Can anyone share their experiences with Humira in terms of speed of effectiveness. Especially interested in those with similar symptoms.

Thanks all!
Posted 3/3/2021 9:12 AM (GMT -5)
Hang in there. My experience. I started Humira fall of 2016. They said 8 weeks. It was crazy...on the DAY of the beginning of week 8...bam...it kicked in and I went into remission.
I mean...THAT morning.

Up until that morning. I remember thinking this is ridiculous. It’s not working. This isn’t the drug for me. I’ll never get well. Etc. etc. etc.

The GI kept saying stick with it. And I was calling his office constantly. I’m sure they all wanted me to stop calling and go away. Lol.

The day of the beginning of week 8. I’ll never forget it.

BAM. I went to the bathroom in the morning like I always do and I had a “normal BM”!
And it stayed that way for a long long time.

Praying for you now.

Post Edited (Rusty Barr) : 3/3/2021 7:15:37 AM (GMT-7)

Posted 3/3/2021 9:22 AM (GMT -5)
Rusty Barr,

Thanks for the reply. That is very encouraging. I hope I experience similar results and that we both get to enjoy a nice long remission. Whenever a Humira commercial is on TV and the happy music is playing, I always joke with my wife that I wonder when my little yoga-in-the-park dance party will start.

"Humira.....Remission is possible.....or you might die".....(just some dark humor....gotta keep laughing right?).

Seriously, thanks for the reply and hope you have continued good results.
Posted 3/3/2021 9:29 AM (GMT -5)
I'd give humira 6-8 weeks for a response, if you're going to get one. about 65 percent of us respond to any given biologic, odds are good but not a guarantee of success.

A few things to know about humira. There's a humira blood concentration test you can get, to see if you're within an ideal therapeutic/healing range. If not, Humira dosing is variable, and some of us do require weekly shots for it to be effective.

If you do ultimately fail humira (too early to tell) know there's other biologics to try: stelara, entyvio and the similar strength (but technically not a biologic) xeljanz.

It's a frustrating disease, lot's of waiting, hoping, anxiety, and second-guessing our progress/regression/etc. Try to think positively, but like in a chess game always do have a backup plan just in case you ultimately need it.
Posted 3/3/2021 11:09 AM (GMT -5)
Where I am today. Maybe this will help someone.
I went off humira because I got pneumonia in the late spring 2020. Not COVID, thank God.

GI and family doc both agreed, get off the humira to get over the pneumonia. I had been in remission for a long time. Been on humira since October 2016.

So. I get off the humira and I get over the pneumonia. Still in remission! Whoop.

So. Just recently, about two months ago, had a check up, told GI I was feeling great. Some days loose, but I can live with that. He looked at me, like, ok, yeah right. He didn’t say that. But I’m just reading his facial expression.

He orders blood work. Well, not being on anything, I guess? ...A lot of my inflammation markers in my blood ...too high. Not crazy high. But above his comfort level from the normal range. Almost all of them higher than normal range.

I m 58. He says “you don’t want to live with inflammation like that in your body. Trust me. Not good”. You “have to be on something”.

I was tempted to ask him, the risks of that, living with inflammation markers in your blood being high.
But, I thought, maybe it’s best just not to know. And to just trust him. So. I did.

So, I told him, can we try some other drugs? We all know the stories about humira.
Although Humira ...it was great. Kept me in remission for years. I’m thinking I maybe I GOT the pneumonia, which didn’t put me in the hospital, but I was sick as a dog with that. You don’t ever want to get that. Pneumonia is Awful.

He says sure. Well, I tried Apriso ...nope...squirts. Almost immediately. No blood. But squirts. Argh.

Then he puts me on prednisone to get me back into remission. Prednisone 40 mg Works. Good.

Firmed up. Start the prednisone taper.

Ok. Next trial. Balsamiside. (Generic coalzil). That night...squirts. Immediately. Argh!!

He said. “That’s it ...no more trials. Back on humira you go” ,

I’ve been off humira for about a year. I start back up with the maintenance dose this Monday.

Praying it puts me back in remission and I haven’t developed antibodies to it.

So spoiled being in remission for so long. Last two months have really been rotten.
Cramping. Squirts. Awful.

I don’t know if there is a moral to this story. Other than, for me...
“When you are in remission...do not take that for granted!”
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