I started taking Xeljanz, the new RA drug, in late July and since then my life has changed. I began physically feeling better in by mid August, much to my surprise. After being on a number of drugs for RA during the last four years, I had less and less hope with each new start of medication. Feeling better wasn’t a gradual thing. It happened literally overnight. I had one good day followed by another and another until I realized I’d had two good weeks. I don’t remember a time in the last four years I’ve ever had two good weeks! In feeling better, I thought I could go back to living my life doing what I want and being more active. That was short-lived. I’ve induced three major flares since feeling better by over-exerting and over-extending myself. I was like a bird out of a cage but I forgot I didn’t remember how to fly so I just did a lot of wing flapping on the ground, LOL!
I always thought if I got any better that I’d be able to have a life physically beyond walking to the mailbox and back. As one good day on Xeljanz turned into weeks, I got busy. I began to assume health care responsibilities for my only surviving grandparent, I started a private bible study group, and I went on shopping outings with my sister and Mom. These are all normal activities. To the average person adding these activities to a weekly routine is nothing, but for me I was exerting my body far beyond its ability and ended up paying more spoons* than I had. These three flares I mentioned have not been as painful as flares I’ve had in the past, but each have been bad enough they required use of nitroglycerin spray for the stress they have put on my heart from swelling and pain, and I’ve literally had to go on at least 12-16 hours of bed rest following each event.
What have I learned? That feeling better because of a new medication regimen doesn’t equal remission and doesn’t mean you can resume your life as the physically active person you once were. I had a reality check. I have permanent RA damage to my body. I’ll never be 42 years old again and in the shape I was before diagnosis. I’m a 46-year-old woman with multiple illnesses that are non-curable and even life threatening. Disease impacts my life every day. As we’ve learned in Sunday School class, we are each in a different season of our life and we need to embrace that season because we will never get it back again. I hope I didn’t miss this season of feeling better by not honoring my body.
As it turns out, I don’t know if I’ll be able to stay on the Xeljanz. I see the rheumatologist in a few weeks. My preliminary labs on Xeljanz showed the medication has grossly raised my cholesterol levels. This is a known side effect of Xeljanz. I’ve never had high cholesterol readings. Should the next markers be as high, despite the newly prescribed cholesterol medication I’ve started, the doctor can’t allow me to continue on the medication because of the adverse effects high cholesterol will have on my heart. I’ve touched the brass ring of feeling better and I’ve nearly blown that brief time by overindulgence in physical activities. I’m praying I can enjoy these next two weeks of feeling better flare free and then hopefully if my lab values are stable, it will continue through winter! Regardless of the outcome, I have enjoyed this brief reprieve from chronic pain in the moderate range, daily moderate degrees of stiffness, and poor mobility. I got to spread my wings a bit and it felt good even if I never left the ground! 🙂