Help! My Biologic Stopped Working For Ankylosing Spondylitis
I took the same biologic, Remicade, for ankylosing spondylitis for a total of 2 years. At first, it helped me tremendously. Now it’s stopped working altogether.
The beginning of my biologic experience was amazing. I felt energized, and the medication controlled the pain as best as it could. I completed 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, you do it 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.
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.
I continued the infusions every 6 weeks for about 6 months, until September of 2019. That’s when things got a little worse.
In September, my doctor decided to increase my infusions to every 4 weeks. This was partially because of my pain, and partially because I had stomach issues going on.
We agreed that I would recieve 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, the infusions did help for about a week and a half, 2 weeks tops. Now, my pain reminds me of how it felt when I first noticed symptoms of ankylosing spondylitis, and my fatigue is debilitating some days.
At my last infusion, I talked to my rheumatologist about what we can do. He ordered me an MRI and told me that inflammation must be visible in my scan in order to switch to another biologic. NSAIDs are out of the question because I'm allergic to them.
I had my MRI 2 weeks ago, and no one has called me back about my results, which worries me. My rheumatologist stated that he wouldn't know what to do if my scan showed no inflammation, 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.
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View all responsesI’m still worried, especially since I haven’t heard anything back from my scan. I always worry 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'll see my rheumatologist again in 3 weeks, so I’m hoping to get some answers then. What biologic drugs have you been on for ankylosing spondylitis, and did they ever stop working?
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