When It’s Time to Come Off Humira

I have often blogged about my Humira diaries and today it is time for another Humira update: according to my doctors, it's time to come off Humira.

Years on Humira and evidence of healing colon

I have been on and off Humira for about 4 years now for my Crohn's disease. I took it for the first time in August 2019 and stopped it in February 2020, a few months before the birth of my son. (In the UK, it is standard to stop Humira at 26 weeks of pregnancy unless the patient is still flaring.) After my son was born in May, I seemed to flare on and off until I went back on the drug in September 2020.

Life has felt pretty calm since then. Finally, last month I received the news that my latest pill cam had found evidence of healing and there wasn't a sign of active disease. So, apparently, it was time to come off Humira...

Why do I have to come off my Crohn's medication?

"If it ain't broke why fix it?" comes to mind. But, I think this really varies depending on where you live. In the UK, the NHS only approves medication like Humira for a year at a time, and a patient has to demonstrate their need for it to continue. I think in the U.S. and other countries where healthcare isn't universally free, this is different and people stay on medication under different parameters. I suppose there is no right answer as to how long someone should stay on a drug. However, either way, for me it's time for me to stop biologics and I'm a little bit nervous!

I've depended on my injections to control my IBD

Humira is definitely a security blanket for me. I've gotten used to the routine of injecting every 2 weeks. If I feel stomach pain or panic a flare-up is looming then I reassure myself medication is only a few days away. Each time I inject I feel positive that I'm helping my immune system and digestive tract stay calm.

It is definitely a psychological thing because I am not sure I need the medication at this point, but it does make it easier when I am worried about potentially being unwell and my IBD escalating since Humira is always in my fridge!

Nervous about stopping Humira

Finding the exact time to stop and say, "I'm done!" feels trickier. I still have a few pens left so will be using them. (Not least because they're very expensive to the NHS and that would be really wasteful!) I have a holiday next month and I definitely don't want to stop right before then just in case it causes any problems. It feels silly, but I also feel that I need to be in a good place mentally – stress is definitely my biggest trigger and I don't want to cause a Crohn's flare-up immediately after stopping.

However, I am excited to potentially be taking less medication and seeing if my IBD stays under control. I haven't really had an extended period of remission so I am really hoping this could be it.

Thankfully, the last time I stopped Humira the side effects were minimal (but I was pregnant at the time) so I am hoping this will be the same this time, too. Let me know: Have you stopped Humira or another biologic? How did it go for you?