Does Cosentyx work? Experiences?

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I'm 20 and was diagnosed wirh Ankylosing Spondylitis around 4 months ago after a year of confusion. H-LAB27 positive and I have sacroilitis which is why they have decided it is ankylosing spondylitis after three different diagnoses. I currently take prednisolone and methotrexate both 15mg and experience pain/stiffness in nearly all of my lower peripheral joints but this is now under control. I am going to start taking cosentyx (secukinimab) 150mg in the new year alongside methotrexate. Does anyone take it and have some wisdom to impart? Does it work and if so how long did you take it for? I used to be really into running and am hoping (perhaps naively) that I can start doing it again in 2019 after a year of hell.

  • M

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  • Posted

    I've been on a 150mg dose (1 Pen) of Cosentyx since early July and I was completely pain free by the second maintenance dose (you usually have a weekly loading dose for 4 weeks and then a maintenance dose the week after and then a dose every 4 weeks after that) your lucky to be offered it so quickly! Most NHS trusts require that you have tried numerous NSAID's before offering Biologic treatment but they seem to have skipped you straight to DMARD's which isn't actually necessary when you have AS but still I'm waffling... I can't reccomend it enough although it doesn't work for everyone and if you don't get any relief within 4 months they usually put you on a different one but so far Cosentyx has been working well for me and I only really get back pain now after spending all day on my feet at work and my morning stiffness and pain in my back and hips is gone entirely! I only get some slight stiffness and pain in my feet which is AS related and I still have packets of NSAID's in the draw which I haven't needed since August and I only occasionally take some Co-Codamol (8/500mg) when I've been on my feet all day at work 😃

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    • Posted

      This sounds very promising - thanks a lot! Anyone is bound to have pain after being on their feet all day so definitely sounds like an improvement. Do you do any exercise at all? I'd love to start running again. Just to clear things up I have had severe symptoms for around 18 months and have been on naproxen, sulfasalazine, etoricoxib and had at least 5 steroid injections. Currently taking methotrexate for 4 months but the only thing that seems to work is prednisolone tablets. I do believe I have been fast tracked somewhat though, my doctors have been very good.

      All the best

      M

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    • Posted

      I do exercise a little (probably not as much as my Rheumy would like mind) and I started the coach to 5k plan in August but I've let is slide a little so need to try again after Christmas 😃

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  • Posted

    I've had AS 36 yrs. Been on Cosentyx bout three months and have no stiffness in Sacral joints. Did the loading and now take 150mg every 4 weeks. Feel it's working. Have never been prescribed methotrexate. Best

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    • Posted

      This is what I was hoping to hear, thank you. Hopefully alongside mtx I will feel some benefit. If you don't mind me asking, how old were you when you were first diagnosed?

      Cheers

      M

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  • Posted

    I was 26. Been lucky at keeping AS in Sacral Joints. Been unlucky, acquiring other immune diseases. Best

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  • Posted

    I have AS for 13 years. Now Iam 36 years old. First period I was on Salazopyrin later doctor change to Decortin and Metotrexat. It was ok for few years. After some period didnt work any more and doctor change therapy to Cosentyx. In few weeks I dont have any more pain in my knees but remain pain in Sakrial joints. Its very hard for me to shift my body when I am horizontal in bad, its like I am frozen. Now dr. increase my dose of Cosentyx to 300mg and I hope so it will work. Will see in few weeks. If not working I will need to change therapy. If some one have similar symptoms and therapy it will be nice to see final results.

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  • Posted

    Hi, I have been on Cosentyx for AS for four years and I find that it does help. However, previous to the Cosentyx I was on on Humira which I personally felt was a better drug. I had to stop the Humira due to other medical reasons.

    I am a 56 year old male and I'm fit for my age, prior to my AS diagnosis during my mid twenties, I was involved in a lot of sports and competed at amature level.

    I broke my neck in a fall in 2018 which led to posterior cervical fusion C4-T2. I then had further surgery only last week, Tuesday 16 March 2021 again for posterior instrumented spinal fusion T10-L3. The operation was required due to my spine being unbalanced following biological, natural bone fusion. I had a pseudarthrosis (failure of fusion/ break) at the thoracolumbar junction.

    Surgery isn't common with AS and I have had the condition for over 30 years and treatment wasn't as advanced back then. Medication is improving all the time and will only get better. You are still young and therefore will hopefully be able to lead a fairly normal life once the condition is under control.

    I advise that you keep as fit and active as you can, I find swimming helps and eat a good balanced diet. keep a positive mental attitude as much as you can and the Cosentyx will do the rest.

    all the best best on your journey, stay strong.

    Paul

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