Understanding Axial Spondyloarthritis - Episode 16
Tiffany Westrich-Robertson: Since being on a biologic I have been able to have a pretty good quality of life. I’m going to actually tell you a little story about something that happened. When I first moved home, and after I had been diagnosed with nonradiographic axial spondyloarthritis [nrAxSpa], I had to go to yet another new rheumatologist. And I was doing very well on my biologic, the symptoms of having to tilt my pelvis forward, I was feeling pretty good. Being able to attend conferences, being able to extend my day a little bit so I could go to dinners, where I couldn’t before. Being able to public speak. I had to stop doing that because I didn’t have the energy. So all of these things that were just so wonderful.
This new rheumatologist did my blood work, and she did the x-rays and came back and said, “I don’t think there’s anything wrong with you.” And I just went back to 2007 and said, oh my goodness, it’s happening again. And it was because I was doing so well on the Cimzia that I wasn’t standing there hunched over. I wasn’t unable to get out of bed. The things that got me diagnosed and on the medication. She ended up saying, “I’m not going to give you a prescription for the Cimzia.” And I don’t know what my face looked like but I was in disbelief.
I said, “I just want to make sure I’m hearing you. I spent the last decade getting the right diagnosis and the right treatment, and I am finally in a place that I’m better than I’ve ever been. I can work. I can have a decent quality of social life. I can travel. I can do everything finally, other than play sports, still can’t do that. But, everything else, and you’re going to tell me you’re going to take that away from me.” And she said, “I cannot justify giving you a medication when I don’t necessarily believe there’s anything wrong with you.” So she said, “I’m going to start ordering tests,” and she’s writing this down. And I said, “Save your ink.” I got up, I walked out.
And I thankfully had a couple of months left. I made an appointment that day with a different rheumatologist and I got in about 2 months later—it takes a while to get in—just enough time. I’d only been without the medication for about 2 weeks. And he said, “I’m sending you home with samples and we’re going to get this reordered.” So I was very lucky. But I almost went without.
I have been without it on a couple of occasions for up to 4 weeks. Just insurance changes and things, and I can definitely start to feel it, not really after 2 weeks because it’s a biweekly. So it lasts itself 2 weeks. And then it takes a couple of weeks. There was one time that I was off of it for about 4 to 6 weeks. And it really started coming back full force. It just really goes to show how much the biologics can work if you’re on the right one for your disease.
So when that rheumatologist said to me, “I’m taking it away from you,” she basically told me she was taking my life away. That’s the way I looked at it.