My Biologic Stopped Working For Me
I was on Remicade for a total of 2 years. At first, it helped me tremendously. Now it’s stopped helping me altogether.
The beginning of my treatment process was amazing. I felt energized and my pain was controlled the best that it could be. I was able to do back to back 30-day yoga challenges and go out with friends, too.
With Remicade, you do an infusion at weeks 0, 2, and 4. Then it’s every 8 weeks thereafter. I lasted on every 8 weeks until the spring of 2019, about a year into my treatment.
My first year on Remicade was definitely my best year. I was able to feel like more of a human again and get back to the activities that I loved doing.
I moved to every 6 weeks
Like I said, about a year into my treatment I switched from every 8 weeks to every 6 weeks. My pain and fatigue were creeping back in and I wasn’t able to do yoga every single day as I was before.
The infusions every 6 weeks lasted about 6 months, until September of 2019. That’s when things got a little worse.
I started getting infusions every 4 weeks
In September my doctor decided to move me to every 4 weeks for an infusion. Partially because of my pain, and partially because I had stomach issues going on.
We agreed to have them once a month in case it was Crohn’s. It wasn’t, but my pain got worse and worse as the months went on.
Six months later and the infusions help for maybe a week and a half, tops 2. My pain is reminiscent of how it was when I first noticed symptoms of AS, and my fatigue is some days debilitating.
Addressing how my biologic stopped working
At my last infusion, I talked to my rheumatologist about what we can do. He ordered me an MRI and told me that we will need to see inflammation in my scan in order to switch to another drug. I’m allergic to NSAIDs so they’re out of the question.
I had my MRI 2 weeks ago, and I haven’t gotten a call back about my results which worries me. My rheumatologist stated that he wasn’t sure what to do if no inflammation came back on my scan, so I’m currently both frustrated and worried. If there’s no inflammation, why am I in so much pain? Why am I so fatigued?
I’m not entirely sure about what’s going to happen next, to be honest. I know that not every drug will work for everyone, but when my rheumatologist said he wouldn’t be sure of what to do, I got worried.
I’m still worried, especially since I haven’t heard anything back from my scan. It’s always in the back of my head that I’m just going to be stuck in pain and fatigued like this forever. I think that’s a worry we all have.
I see my rheumatologist again in 3 weeks, so I’m hoping to get some answers then. What biologic drugs have you been on, and did they work for you?
Do you use the word disability to describe your AS?