Pain management for Ankylosing spondylitis

niallb04

Hi, I’m 21 been diagnosed with AS (Ankylosing spondylitis) since I’m 15 and it’s feels like it’s gotten worse pain and discomfort wise.

I started on some orange coloured pills, then methotrexate (both useless) and then biologics (2 years after diagnosis). First biologics was amgevita and I felt normal with that up until last November and in April I went to doc about the amgevita no longer working so they switched me to cosentyx.

since the switch to cosentyx I feel the exact same as I was on amgevita and I don’t feel my pain is being managed. I went to gp and rheumatologist and got naproxen, steroids and co codimol. I felt good for about a week and I’m back feeling grim again.

Question is, has anyone been in a similar situation and how do I get my pain managed.

Note:

Gp told me painkillers won’t help me because it’s inflammation and rhematology doc doubled my dose of cosentyx.

Ellen

Good morning @niallb04 welcome to the online community. From your post I see you are taking Cosentyx (also known as secukinumab) for your Ankylosing Spondylitis (AS) so far without much effect.

I am so sorry that your Amgevita stopped working for you.

Managing pain is really challenging for most people with Arthritis I will attach this information it's possible you may have already tried a lot of what is mentioned, but it is worth reading:

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

I did you a quick search for discussions about AS I don't know whether they would be of interest?

https://community.versusarthritis.org/search?domain=all_content&query=ankylosing%20&scope=site&source=community

If you see any threads which strike a chord do reply to them and hopefully you will get some support back from others with your condition. If you press the @ button before their username it should show up blue and they ought to get an email notification that you have replied to them.

My very best wishes

Ellen.

Arciere

hi there @niallb04

I have been diagnosed with Psoriatic Arthritis which I’m told is in the same camp as as Ankylosing Spondylitis (and Reactive Arthritis and Chrons).

Lately I’ve been experiencing bi lateral hip and lower back pain so I was tested via bloods for a gene called HLAB27 - which was positive - and therefore indicating that I may in fact have AS instead of, or together with PsA.

The reason I’m responding to your post, is because when I ask about medication for AS, following my positive result for HLAB27, and hip pain, it was explained that medication for AS and PsA can be the same.

I take the biologic called Yulflyma. So I wonder if it’s worth asking about that? because in the main, I find it very effective, despite still have fatigue and the hip pain.

I hope this helps