Secukinumab (Cosentyx) Side Effects

Katie22

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.

chrisb

Hi @Katie22, 

You have been suffering with PsA for some time as well as OA. You are about to start taking Secukinumab and have read some negative reviews as to the potential side effects. You’d like to hear from forum members who have experience with this drug. 

You may have already visited our website but just in case you haven’t this link may be helpful:

https://www.versusarthritis.org/about-arthritis/treatments/drugs/secukinumab/

 

There are a few past discussions in the forum as regards Secukinumab such as this one, albeit it some time ago:

https://community.versusarthritis.org/discussion/57826/secukinumab

 

I hope you receive some useful feedback and that the side effects are minimal. 

Best Wishes

ChrisB (Moderator)

Katie22

Thank you. I’ve read a lot about it and some side effects are very scary, diarrhoea (severe and ongoing) being one of them, plus new onset inflammatory bowel disease.