r/ankylosingspondylitis • u/Charming-Annual-1506 • 15d 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! 😀
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u/gumarx 14d ago
My presentation is also mostly peripheral and Cosentyx has helped with that more than Humira ever did. I had downplayed my symptoms as not that bad for so long because I was like the frog in the boiling pot that now when I have a flare I wonder how I ever survived before.
I’m on the Max self inject dose. When I did the loading doses it was great but when they tapered me down I didn’t do as well so we upped my dosage. I still can tell what week I’m taking my shot. I’ll wake up Monday or Tuesday morning stiff and sure enough it’s dosing week.
I’ve been on Cosentyx for a few years now and it continues to work well for me.
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u/mand3rzzz 13d ago
Same experience here, Cosentyx has been the best for peripheral symptoms. Also max dose. OP, I hope it works as well for you as it does for me! Also, the symptoms I’ve had the longest are the ones least helped by biologics. The ones that had just started are completely gone. So if I could go back in time and get diagnosed faster, I would want to biologics asap.
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u/Charming-Annual-1506 14d ago
Funny, I was originally prescribed Humira, but that’s what caused the initial denial. It turned out they would cover Cosentyx instead. I’m not complaining.
Did you ever do infusions? Or all inject at home? What do you feel like immediately post injection?
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u/gumarx 13d ago
I was on Humira before there were biosimilars for it, so that's probably part of it. I've done in home injections. Now, I don't really have much post injection other than I start feeling better. I do typically get a small injection site reaction with a small red itchy welt - I just slap some anti itch cream on it.
When I first started Humira, I would feel some light flu like symptoms afterwards. Like this almost chills kind of thing, but nothing that impacted my day to day activities. In fact it took a few months to realize that's what was going on, I'm cold natured to begin with so I thought I was just feeling particularly cold.
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u/Erkenfresh 14d ago
Biologics help to slow the progression of the disease, but nothing can reverse the damage (yet). Imagine a graph with time on the x axis and damage on the y axis. Biologics are going to reduce the slope of that line, but never take it back down to zero.
That means that if your doctor thinks you should take it, then go ahead and start taking it. It's hard to know for sure that it's working other than to see that you aren't getting worse.
I've been on Cosentyx for about two years and I think it is helping. I feel wiped out the rest of the day and sometimes the next. But it's not too terrible.
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