Posted 1/14/2021 9:44 PM (GMT -6)
My GI and I really have gotten to the point where I go to my appointments and he and I are pretty much on the same page. I started flaring back in October after having been on Xeljance since July. I immediately started taking my full dose of Qing Dai. When my underlying medications are working, that is pretty much always enough to turn things the right direction. This time, things died back down, and then came roaring back. I called the triage nurse, and told her what was going on. I knew it probably meant steroids, which I really didn't want to do. I have been rebuilding from osteoporosis from the last time. GI put me on 40 mg for 4 weeks. I had surprisingly quick for me results. I felt like a big part of it was that I didn't wait for things to get really horrible. I was hoping the steroids might bump me the right direction, but I started flaring back in increments when I started dropping my dose. GI pretty much said to me that the xeljance isn't working, and he is moving me to Stelara. I am uneasy simply because of there not being very many options left......
Now for the rant. Insurance approved in a week, and today the infusion nurse called me to set up my initial loading infusion. She started asking me how I was doing and did my blood work show the Xeljance wasn't working, even saying she needed to pull my stuff up. I was confused, because it was like she was questioning me needing to go onto it. Then she wanted to know how many weeks it had been since I had been on Xeljance. GI didn't tell me to stop taking it, so I told her this morning. (I saw him a week ago) She told me that usually they want you to wait 8 weeks off of Xeljance before starting but that she thought 2 to 4 weeks would be ok. She said she would talk to my GI, and then call me back to schedule. I almost asked after I left my appointment if I should stop taking the Xeljance, but I didn't. Now I am kicking myself, because I bought myself more time on steroids. Her questioning the validity of the switch has me feeling less confident in my switch. I tend to grin and bear things. I was way more proactive this time because I didn't want to get really inflamed and run down, and start a new med from that space. Now I don't feel very confident in my decisions at all........