Changing Crohn's Medicines, Again.
Last updated: May 2023
It has been 12 years since I was diagnosed with Crohn's disease. And within those 12 years, I have tried many medications, some being: mesalamine, Remicade, Entyvio, Humira, Stelara, azathioprine, Xeljanz, Rinvoq.
Doing well on Xeljanz
So far, Xeljanz, which is under the class of JAK inhibitor drugs, has been the medicine that gave me the most relief. Upon taking it, within days I felt better. I had less pain. Less urgency. My energy levels came back. It was wonderful, and I was so thankful I finally found something that allowed me to feel like me again after 8 years of feeling like a shell of myself.
I was on Xeljanz for almost 3 years. I felt good and I was happy.
My colon was doing better, but...
But just this past February I was scheduled for a colonoscopy to see my progress. You see, my bloodwork wasn’t the best. I am still anemic and iron deficient although my numbers are nowhere near where they used to be. My fecal calprotectin is still high along with my C-reactive protein levels and overall my gastroenterologist was not happy with my progress.
Results from my colonoscopy showed that indeed I had improved on Xeljanz as my last colonoscopy showed disease throughout my entire colon, along with ulcerations. Now only my sigmoid colon and anus were suffering. But still those areas were still severe with inflammation and ulcerations.
Switching to another biologic for Crohn's
After discussion, it was suggested to change medication to try and find something that would get these areas healed and my inflammation down. I agreed. The first move was to Rinvoq. It is the same class of drug as Xeljanz but new and improved. Well, it immediately made me sick.
I reacted badly to it, got fevers on it and it threw me into a flare. We tried to lower the dose, but still the symptoms occurred. So now the game plan is I will try Skyrizi. Back to a biologic and leaving the class of drug where I found most results, which was the JAK Inhibitor.
The Crohn's treatment journey can be rough
I want to share my journey because I know I am not the only one that has gone through this tiring process. It is hard to have to start over again and be in the land of unknown especially when you finally felt secure and well on a certain treatment.
I loved the medicine I was on because it was a pill I would take twice a day. The bottles were conveniently delivered to my home. It was no fuss. I felt well and I thought this was the drug I would be on for quite some time.
I do, of course, understand why my doctor wants to change, and I stand by the change. I do want to finally reach remission and heal my insides. It is wild how you can feel like you are well, when on the inside you actually aren't.
Switching biologics and staying hopeful
It is important I remind myself to trust the process and be hopeful for the good. Yes, biologic drugs in the past did not offer me much relief, but I've never tried this specific one. It is also a new kind of biologic that works in a different way from the others as it is an Interleukin-23 inhibitor.
This may be the one for me. And I have to focus on that. I have to remain hopeful and open to this change. Welcome it and try my best to adapt. If not, then back to the drawing board I go, but no matter what, my goal is to heal. So I'll do whatever it takes.
How about you? Can you relate to this treatment journey? Comment below anything you would like to share.
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