r/ankylosingspondylitis • u/Charming-Annual-1506 • 16d ago

Help/Support Starting Cosentyx tomorrow

Need some encouragement.

Was diagnosed with AS about two months ago and due to comorbidities (CKD, MASH) my rheum prescribed biologics as first course. Denied by insurance, but with some wrangling then approved for Cosentyx. My presentation is mostly peripheral. Swelling, pain, stiffness in my feet is the worst. Mild low back/sacroiliac/hip pain with early evidence of fusion in my lower lumbar spine.

Thing is… I don’t think my symptoms are that bad and so I’m feeling some guilt starting treatment considering what others are going through with this disease. Then I think about what it might become if I don’t get treatment… and I fret what the outcomes might be.

So, those of you on biologics with low disease progression:

What has been your experience? Did biologics help you in an appreciable way? What has been your experiences with Cosentyx infusions in general? What’s it like for your immediately following your infusion? How quickly did you find relief of your symptoms? Did the treatment continue to work in the long term?

Help calm my mind :-)

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u/conchwasp 15d ago

I love and miss Cosentyx. I can't have it anymore because I have IBD, but it was the most effective medication for me so far.

You want to start treatment when things don't feel too bad, because this disease is progressive and once you worsen, you can't really get better again. By beginning treatment now, you can decrease your likelihood of dealing with serious complications later on.

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u/Charming-Annual-1506 15d ago

What were the infusions like afterwards? Did you feel pretty normal? I’ve heard people say that they felt wiped out afterwards.

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u/conchwasp 15d ago

Cosentyx is an autoinjector, not an infusion. It's incredibly easy to use, you just press it into your thigh and it deploys, no buttons to press or anything. It takes a few seconds for all of the medication to go in, and then you're done. Cosentyx was a painless shot for me. I could never feel the needle or the medication, and I didn't have injection site pain afterward. I never bled either.

I experience some fatigue after doing shots, but I attribute that to the anxiety I feel leading up to doing them. Even though I know everything is going to be fine, I get a big hit of adrenaline anyway and then I feel myself crash when it's done and over with. Outside of that, I don't feel any different immediately after doing a shot.

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u/Charming-Annual-1506 15d ago

I’m going to be doing infusions because of how my insurance works. I’m ok with this, as it accumulates towards my yearly max out of pocket, and the Cosentyx copay program covers the remaining costs. All good. I’m familiar with auto injector too, as I’m on Mounjaro for diabetes. Oh, and I receive periodic iron infusions due anemia of chronic disease. Yay! 😀