Biologics: To Take or Not to Take? That is the Question!

When I was first diagnosed, I asked: "Is there a cure?"

I was told there was no cure, but advanced treatments that can manage and slow the progression of AS. The second question I asked was what the side effects of these treatments were, and what could happen if I didn't go on treatment. My doctor basically told me if I didn't start treatment the disease would progress very quickly, I could develop irreversible joint damage, and possibly my spine will fuse causing a hunch in my posture. She explained to me that the treatments are very effective, and I would be fine.

Something told me that I wouldn't be fine

I wanted to do my own research and educate myself on the treatments available. My doctor started me on Humira and steroids. Humira was proven to be an effective biologic to treat AS; however, after being on it for 3 months, I felt no improvement in my symptoms or pain. I was then switched me to Enbrel...same result, it did nothing for me.

After both failed, I requested to speak to the head doctor of rheumatology to express my concerns. The head doc explained to me that these treatments take time, and some may not be effective. I would have to try different treatments to see which one works. As you could imagine I was not happy to hear, nor was I eager to try different medications.

But back then, I didn't have the knowledge that I have now. I went through the process of trying different treatments, from infusions to anti-inflammatories. You name it I took it, but nothing seemed to help. It seemed like I was getting worse by the day. Pain levels were not controlled, my inflammation markers were high, and I started to question why nothing was helping. If these medications were supposed to help slow the progression so why am I getting worse?

I got so frustrated and stopped all medication

I developed stomach issues, then fibromyalgia a few months after trying different treatments. I then started advocating for myself. I refused to just accept trying different treatments if they were not going to help. I was told if I don't get on treatment the disease would progress, but it was progressing even on treatment, so what was the point of the medications?

I trusted in medication and doctors because I did not know what AS was, I trusted that they had my best interest when it came to my care. If this was a lifelong chronic condition, the meds should help right? Wrong. For my body, wrong. My body was rejecting everything! I started to feel like I was misdiagnosed. Maybe I didn't have AS. Maybe I'm going crazy. I just couldn't understand why noting was helping and I was getting worse by the day.

My scans were showing joint damage, herniations, tendinosis, and I developed migraines. It made me question what I was putting in my body. If the prognosis is that the disease will progress if I didn't take the biologics, why did it still progress when I took the biologics?

I learned to always advocate for myself and to not just trust the "norm"

I am happy for those whom medication has worked for, and I have nothing against medication! But unfortunately the available treatments haven't been effective for me so far.

I now take sea moss daily along with other natural supplements, and I'm able to dance still, something that is very near and dear to me. Do I still have pain? Yes, I don't think this pain is ever going to go away. But there are ways to improve my quality-of-life without taking so many different medications that did not help me anyway.