Cosentyx and pain

[Ewillow]

Morning everyone.I've been on Cosentyx for a year now, I was on 150mg but was put up to 300mg. This doesn't seem to have changed any of the pain I'm getting and my psoriasis is out of control. The last time I spoke with the Rheumy nurse she said they couldn't change it yet as they may not get the funding again changing it so quickly. I find this worrying as everyday my wrist is getting is worse and I'm struggling to walk down the stairs. Has anyone been told they wouldn't get funding from changing? I feel if it isn't working then it's time to change. Worried the damage it's doing.

[rmros]

Sorry to hear this. I was switched to Cosentyx because the Humira wasn't working well enough and they couldn't continue funding it. What other biologics have you tried? It does sound like after this long it's time to try something new.

Do you take methotrexate as well? I had a low dose of methotrexate added to the Cosentyx and it works better since. At 12.5mg the side effects aren't bad for me.

[Ewillow in reply to rmros]

I've tried benepali and that was amazing for years but unfortunately stopped doing it's job. Before that I was on methotrexate and that gave me horrible side effects then sulfasalazine and that was not useful either so back to the drawing board. Fingers crossed for something new and amazing!

[rmros in reply to Ewillow]

Keep hope - there are alternatives.

[oldtimer2]

Secukinumab (Consentryx) NHS indicative price: £1,218.78!

I can understand them being concerned about funding! But if it's not working for you - and I would think a year is long enough to find out) it's wasted money.

You might find this website - USA, not UK unfortunately, helpful in looking at alternatives:

drugs.com/compare/cosentyx

Your psoriasis needs bringing under control as well as the arthritis, and there seems little option but to nag your rheumy team about what the plan is for the future (or 'going forward' as they say now!)

Please get in touch with them again and ask to discuss future treatment plans, pointing out that you are wasting NHS money currently which could be better spent on something that might be more successful - and that saves the NHS money.

[Ewillow in reply to oldtimer2]

Oh yes I definitely understand why with the costing! But I think I've waited long enough to see if it works. I was on benepali before and that was wonderful but after a few years it decided to not be as effective anymore. I have been nagging them but no reply they are pretty bad at getting back to you. Just not sure I can wait until my July apt!

I'll look into that link thank you.

Agree with it wasting money. I just want to feel remotely normal again especially with a toddler and child it's tough work.

[Shadow35]

They told me to see the full effect of cosentyx is 6 month. I just start with one dose in december and i saw a big improvement after few week, and the rest after 3 month. One year is very long. Did your symptom improve at the beginning with one dose or you wait one year to get to 2 dose. Without any change at all. The nurse told me i need to be in pain all the time (Like before) with one dose to get the double dose. Was hoping cosentyx gonna stop every symptom but i still have flare. Less big and less painful. Hope they find the right treatment for you.

[Ewillow in reply to Shadow35]

It's been pretty steady with the pain I'm having but within the last 3 months I'd say it's been continuous and my skin is just getting worse. I'm not sure whether the cosentyx is actually making it worse if I'm honest. Is this your first time on a biologic? I was on benepali for years and had no pain so I'm not sure if this is just how I need to live now.

[Shadow35 in reply to Ewillow]

Yes it's my first time on biologic. It really improve my condition but it took a long time. Good luck