Feeling disappointed : I started a new AS... - Pain Concern

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Feeling disappointed

TKLOVE profile image
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I started a new AS treatment called cosentyx last June and was so thrilled as I thought I’d finally found a treatment that really helped, but 8 months later Im so disappointed as I’ve found every month the treatment begins to wear off sooner and sooner,at 1st the cozentyx worked really well all month, but after the 1st few months it began to wear off a few days before the month was up,but now it doesn’t work for any longer than 3. wks and then im in agony for the rest of the month and then it takes about a wk for the next months injection to start to work,so I’m lucky if I have 2 good wks out of a month, can’t help but wonder how long it will be before it stops working altogether and I end up having to switch to another treatment again, that’s if there is anything else I can try as I’ve had every treatment I know of, so guess I will just have to wait and see what my consultant suggests when I have my next appointment with her which won’t be for another 6 months or so 😢

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TKLOVE
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Bananas5 profile image
Bananas5

Hello TKLOVE

Thank you for sharing this. I was just starting a post to ask about cosentyx. Spooky.

My David has advance AS and together with a broken spine , plus many other associated conditions, suffers so badly.

I was researching the possibility of anything to help and came across an article on these injections. The cost was high but approved by NICE when NSAIDs couldn't help anymore.

We live in the Canary Islands,#...have an excellent pain team so translating for them to understand.

Can you tell me what drugs you tried before these injections and what you still take?

David has been on Oxycontin for about 3 years now which replace 12 years on Fentanyl. Reducing Oxycontin slowly with intention of stopping completely. His pain is no worse on lower dose which speaks volumes for strong drugs. (research shows that stronger and more frequent is not better.)

I now have him on CBD capsules as well as topical salve. Legal here! Oxynorm too.

Pat x

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