Reflections After Three Years of Being on Cosentyx

We are going three years on Cosentyx. Cosentyx is the fourth biologic that I have been on, and also the one I've been on for the longest time. Before Cosentyx, many countless other medications failed to work for me. Many I had to stop within a couple of weeks.

"How do you know it's working?"

Every rheumatology visit, my rheumatologist will ask me the question: “How do you know Cosentyx is helping you?” I will answer, “Cosentyx has helped me be able to sit longer, stand longer, get out of bed easier in the morning, less stiffness and less joint pain.” If I turn back time, most of my days were spent in bed in comparison to now. I was not able to work or take care of my family. Self care, like taking a simple shower, washing my hair and getting dressed was just impossible some days.

I started taking Cosentyx with the recommended dose of once a month at 150mg. But when speaking to my rheumatologist, we decided to move it up and start injecting every other week. This helped for a long period of time and I saw a difference. Don’t get me wrong, I still have bad days, but I get less flares. Cosentyx helped me with getting more easy days where the pain was manageable. As time went by, we recently switched to taking my injection every 10 days now. It's not typical to use Cosentyx like this, my doctor calls this usage "off-label."

I had tried many medications

Cosentyx was my only chance to make it work. Because I have brain lesions shown on my MRI, my neurologist had told me that I would not be able to take any biologics that are TNF because I would risk getting more. For example, when I was on Humira I had to get off because of the neurological symptoms I was getting. Luckily, Cosentyx helped in that aspect with little to no side effects. The only side effect with Cosentyx is that I can get sick very easily.

Before the New Year, I got sick with bronchitis and the strep throat. This made my body go into a flare. Since then, every time I do my injection, I haven’t been able to get long lasting relief. It has slowly come to the point where my last recent injection, I have had no relief. How can I tell? I can tell because the increase of pain medication has come back to taking more often. I been taking my pain medication every day again.

What my rheumatologist thinks

My rheumatologist knows about all this. He thinks it’s Cosentyx rejecting my body. At my last appointment, he suggested to take a blood test to check my CRP to see if the inflammation has increased and if so, to try loading doses again. This hopefully will boost the drug to help it work again.

I am trying to think positive and see the light. But it’s been very hard, when most days have been spent in high pain. When I look forward, all I can see is pain. I had big hopes Cosentyx would be maybe the last medication I would be on to help with my disease. I had big hopes that Cosentyx would help make it through at least a 10 year mark like you read on some stories of others.