Secukinumab (Cosentyx) Side Effects

Katie22
Katie22 Member Posts: 6
edited 28. Nov 2023, 14:10 in Living with arthritis

Hi everyone, I’m new to the Community, although have suffered from PsA for several years, plus osteoarthritis for even longer. I’d like to hear from anyone who is or has been on Cosentyx for PsA as I’m about to start this biologic and reading the reviews online about side effects is very scary!

I was originally on methotrexate, which helped a bit but not enough and I couldn’t tolerate it very well. In 2018 I was put on Adalimumab (Humira) and it started to work immediately, but I then had a severe allergic reaction to it. So I was then put on Erelzi, a biosimilar to Enbrel (Etanercept) and it was a life changer, brilliant for over three years. Then I had acute kidney failure in December 2021 and biopsy showed interstitial nephritis, and I was told it was likely a severe allergic reaction to Erelzi, as I was taking no other medication. So I obviously had to stop these injections, even though there’s still a big question mark over whether they were actually the cause. It could have been autoimmune.

Luckily the steroids I had to take to help my kidneys also kept my PsA under control, even after I came off them in April 2022 when my kidneys stabilised. I enjoyed a year of remission, then this March (2023) suddenly went into a bad flare. My brilliant Rheumatologist was in a quandary as to what to give me, as many PsA drugs are not suitable for people with chronic kidney disease.

I’ve had some steroid injections to help me through until starting on Secukinumab, but I’m now terrified to go on it after reading some horror stories online. Even the Biologics Specialist nurse said to take the loading dose ‘if you can tolerate the side effects’.

Please can anyone tell me what to expect, even though I know we are all different.

Thank you, and sorry for the long message.

Comments

  • Ellen
    Ellen Moderator Posts: 1,757

    Hi @Katie22

    Just did a quick search and came up with these threads:


    https://community.versusarthritis.org/search?query=secukinumab&scope=site&source=community

    @jamieA is a regular poster might know more....?

    Best of luck please do let us know how you get on.

    Ellen.

  • frogmorton
    frogmorton Member Posts: 29,830
    edited 5. Jun 2023, 13:36

    Hi @Katie22 nice to meet you and welcome you to our lovely forum😊

    My brother has IGA nephrology (SP) it's autoimmune. I totally get why you'd be nervous taking a new medication in your situation. Must be so upsetting not knowing whether the Etanercept was even the culprit causing your kidney issues😕

    I don't remember jamie A starting on secukinumab but I think the reply he got might be useful for you.

    Wishing you all the best and hope you'll let us know how you get on.

    Toni

  • jamieA
    jamieA Member Posts: 801

    Hi @Katie22

    I wasn't moved onto secukinumab last year but have stayed on Amgevita (adalimumab). I think I was going through a flare at the time and the consultant had a specific blood check done on me to determine if I was building antibodies to Amgevita. It turns out I wasn't and the flare passed. So I'm sorry I can't help answer your question. One thing that I'd maybe ask is if there would be any difference to your reaction to any of the biosimilar adalimumab drugs that are now available. My understanding of Amgevita is that it's main component is adalimumab but it is 'packaged' differently to Humira.

    I hope you find a solution soon.

  • Katie22
    Katie22 Member Posts: 6

    Thank you Jamie, I’ve been on Adalimubab several years ago and had a severe allergic reaction to it so had to come off it. Then I was put onto Erelzi (Etanercept) and was fine for over three years apart from some minor side effects, but then had acute kidney injury that the renal consultants said was an allergic reaction to Etanercept. So now about to try Secukinumab as it’s not a TNFa-inhibitor and works differently. Thank you for answering, I’m so afraid now that there’ll be nothing that I don’t react to.

  • Katie22
    Katie22 Member Posts: 6

    @Ellen @frogmorton thank you for replying, I’m going to ask my biologics specialist tomorrow to go over the side effects with me in more detail, there wasn’t time last week during my assessment as they’re all so rushed, but hopefully by booking a telephone appointment tomorrow I’ll get more answers. I’m so frightened I’m losing sleep over this.

  • frogmorton
    frogmorton Member Posts: 29,830

    Easy for me to say, but try hard to forget it and get some sleep this is not good for you or your arthritis at all ((())) xx

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