Considering stopping Humira

I met with my GI today, who is an IBD specialist and whose opinion I respect and trust. We discussed possibly coming off of Humira and either trying lialda or trying to go med free and see what happens.

Some background info: I was originally diagnosed with UC in 2010 after having blood in my stool. I took lialda for about a week and then stopped taking it and went into a med free remission for 5 years until I got pregnant with my first child. I had a flare up during my pregnancy and went on lialda the last few weeks of my pregnancy and stayed on it until about 18 months post partum when I ended up in the hospital with cdiff and a flare up. I was hospitalized for 9 days and ended up starting Humira, antibiotics and prednisone before leaving the hospital. I’ve been on Humira since 2017, continued it throughout my entire second pregnancy and have been in a histological remission since starting it.

The GI I currently see started seeing my 4 years ago and all 3 colonoscopies I’ve had with him have been completely clear.

Full disclosure: I’m actually kind of terrible about taking my Humira on time. Sometimes I realize it’s been 3 weeks and I haven’t taken my next dose. I have a surplus of shots in my fridge because I never remember to take it on time. So I’m not even sure how effective it is at this point.

My GI and I discussed a few options today. 1) going off the Humira and taking no meds and see what happens 2) go off the Humira and start taking lialda 3) go off the Humira and start taking a different medication (Entvio or stelara) 4) stay on the Humira.

He said that Humira is basically last in the list of medications that he prescribes to people with UC. He said there are more effective drugs with better safety profiles that he prefers to prescribe.

I feel very conflicted about the whole thing. I would ideally love to be on no medications, but I also don’t want to have a huge flare and regret my decision. Although, i do worry about possible risks from these meds. Like i said, very conflicted.

Have any of you tried to go med free and had success? It’s tempting to me because I’ve done it before and I really think hormones are a huge trigger for me. I’m done having babies, so hopefully huge hormonal shifts aren’t going to be an issue for me until menopause.

Any feedback or suggestions are much appreciated. I talked to my husband, but he doesn’t really understand.

If I were in remission you couldn't make me stop taking my meds.

I'm on Remicade. I can't imagine taking the chance if I absolutely didn't have to. I have stopped Remicade 4 times for surgeries. Each time after 12 weeks I started having issues. I developed antibodies. My GI used methotrexate to lower them, increased my dosage to the highest amount and shortened my infusions to 4 weeks. I would feel breathless during and after my infusion. I had to take Benadryl for a period of time after my infusions and hope it didn't get bad enough that I had to go to the hospital. I was scared that the awful symptoms that were returning would get as bad as my first flare. I shudder to think of it. Plus you have to wonder if any other med is going to work.

Thankfully my GI has walked me thru it each time. I am grateful that the meds seem to be working.

Personally... I would stay on the meds.

Clo

Post Edited (clo2014) : 6/28/2023 5:44:35 PM (GMT-8)

CCinPA said...
To help with deciding what to do I would ask to have the Humira levels checked. If you aren't in the therapeutic range it would eliminate 1 decision since there would be no point to staying on it. Then you have to decide to try med free or go back on Lialda. I would try Lialda first rather than a biologic because the only reason you stopped it was because of the cdiff. Med free is a roll of the dice.

Let us know what you decide and how it goes.

This is good advice. We did discuss checking my Humira levels since I’m not always taking it on time.
I’m really deciding between sticking with the Humira or doing the lialda at this point. Med free seems like too much of a gamble, and I don’t want to hate myself for ending up in a flare.

I will let you guys know how it all goes. Thanks for the input

clo2014 said...
If I were in remission you couldn't make me stop taking my meds.

I'm on Remicade. I can't imagine taking the chance if I absolutely didn't have to. I have stopped Remicade 4 times for surgeries. Each time after 12 weeks I started having issues. I developed antibodies. My GI used methotrexate to lower them, increased my dosage to the highest amount and shortened my infusions to 4 weeks. I would feel breathless during and after my infusion. I had to take Benadryl for a period of time after my infusions and hope it didn't get bad enough that I had to go to the hospital. I was scared that the awful symptoms that were returning would get as bad as my first flare. I shudder to think of it. Plus you have to wonder if any other med is going to work.

Thankfully my GI has walked me thru it each time. I am grateful that the meds seem to be working.

Personally... I would stay on the meds.

Clo

Thanks for the input. I’m glad Remicade is working for you. I’ve talked with my husband and read all the replies here and I do think I will remain on some type of medication for maintenance.

I had some concerning neurological symptoms a few months ago and the neurologist thought it may be MS. She told me that Humira can cause MS in rare cases. My MRIs were thankfully clear, but it did freak me out and make me think about the Humira more than I usually do.

It’s be nice if we didn’t have to make these decisions at all, but we’re lucky there are treatment options available, and I’m especially lucky to have found one that works and has kept me in remission.

You could be on Lialda regardless as well as...and I stress...rectal mesalamine retention enemas.

I have no helpful advice re Humira and ilk.

q

I recently experimented with coming off of Humira. I slowly went into a flare over a month, and 1 month after my last dose I was in a full-blown severe flare. But my UC is the kind that never went into remission on its own. I eventually gave up on the experiment (I was too sick to try anymore) and got back on the Humira.

If your UC is the kind that goes into remission on its own and your doctor is supportive, why not try it??