***I did NOT make this decision without first talking openly and honestly with my doctor AND reviewing a plan for my next choice of treatment.
When I first started Humira, a biologic medication that I injected every two weeks to manage Crohns disease, in 2014, it was magical. It took a few months to work at first, but once it did, I went from a strict liquid diet and being scheduled for surgery all the way to working again and eating a burger (my surgeon's super scientific test to determine if I could truly cancel surgery).
Shortly after confirming remission, I was able to become pregnant and carry my second child and give birth in 2015 with very minimal issues. I even went on to increase my work AND exercise following my son's birth. I am beyond grateful for this medication.
But about a year ago, I started to notice joint pain that would surface from time to time. I started feeling really tired. Psoriasis started to show up on the palms of my hands. And, some nights, I'd wake up because I had lost feeling in my hands and feet and they'd become ice-cold. I also started developing incredibly painful and activity-limiting skin abscesses.
Luckily, at first, I was able to manage joint pain with activity and stretching, I learned to live with the psoriasis, I wore thick socks to bed, and I started using Hibiclens (a powerful cleanser that kills germs for up to 24 hours - often used prior to surgery) on a regular basis. This worked for some time, but then, in July, joint pain forced me to stop running, and the psoriasis wouldn't let up. The skin infections started to actually impact my ability to work and even wear normal clothing - I went all summer rarely wearing shorts, plagued by these painful issues.
Then, one night, I went to bed early due to all the pain, telling the kids that they'd need to come into my bed if they wanted me to read them a bed time story. Before I knew it, our new normal was me laying painfully in bed with a heating pad to close out each day.
The physical pain was one thing, but the emotional pain of being this unavailable for my family was relentless.
I felt myself constantly complaining of pain and fatigue, opting out of family activities due to these issues, and starting to turn back into the "lump on a couch" that usually lets me know it's time to get my IBD checked out. Only, according to labs and scopes, my IBD was not flaring this time.
Were weird side-effects of Humira cropping up, one after another, or were new extraintestinal manifestations of the disease starting to show?
Most of us with IBD play the numbers game with our meds - "if I fail Humira, that will leave me 3 approved meds left," is something I've said to myself a number of times over the past few years. It's really a count down until all med options have been used up. How long will each med last? No one knows. I've been keenly aware of my med numbers-game since I failed Cimzia, my first antiTNF. Back then, I only had Humira and Remicade left. Luckily, there are more options today. However, it's still hard for me to say "OK, this med isn't working for me anymore."
It wasn't an easy decision, but I talked with my doctor about how frustrated I was about my quality of life... and how much I needed something to change. The fact that I was now back to a low quality of life with my gut-symptoms in check, but possible side effects or extraintestinal symptoms slowly taking over, gained his full support of the switch in meds, too.
What I'm not doing, however, is quitting meds altogether. I want to, but I won't be. I think we need to be honest about the fact that, sometimes, these meds suck. I don't want to take them. It's not easy to be committed to a lifetime of taking these meds. The not knowing - "am I experiencing side effects or not?" - totally messes with my head. Taking care of the disease is hard enough, but throwing drug side-effects and the impact of lowered immunity on top of that is a mental burden that we rarely talk about. But that doesn't mean that I'm quitting these meds, because no amount of change in diet or lifestyle can manage my disease - I learned that the hard way a long time ago.