Ankyolosing Spondylitis and Adalimumab

[Stephanie6637]

I have Ankyolosing Spondylitis with a number of spinal fusions already. I started on Adalimumab at the end of April but it's not really helping. I have just had a phone appointment with the specialist nurse who told me that I can't expect to be pain free as I have a lot going on. I told her I don't however I would like to get to the point where I can be more active and get out and about again. She said she might take me off the Adalimumab and then if the pain got worse it was obviously working . At this point I said I would like an appointment with my Consultant. I am fairly new to this horrid condition and wondered if anyone had tried Adalimumab without success and then tried something else which helped. I really can't believe that stopping a drug to see if the pain worsens is best practice.

[AgedCrone]

If you say you are getting no benefit from a drug.....surely it is sensible to find out if you feel any better/worse without it?

Then you will either restart it or be prescribed something else. Your consultant will decide once you report back to your nurse if she does, under your consultant’s advice, take you off Adalimumab.

There is no point in taking a drug just for the sake of it is there?

Not all drugs work for everybody...we can all tell you the drug that was useless ...then the relief of finding the one that works well. It really is a case of trial & error to see what works for you.

Don’t you think your nurse saying ...‘you have a lot going on’ .....meant your multiple spinal fusions ?

In which case some sporadic pain seems inevitable ....until you find a drug that suits you. I have a couple of fusions in my cervical spine....& sometimes I have pain & sometimes I don’t.

Hope you get something sorted soon.

[Hidden]

I take cimzia for AS and it took well over 6 months for me to feel any benefit from it. My nurse told me to stick with it when I said after 3 months I felt no change and I am glad she did. Less than 4 months on the drug isn't very long. Some people reckon it works immediately (personally I think this is a placebo effect), some say it takes a while, some derive no benefit. It is a bit of a lottery unfortunately.

The aim is to slow further fusion, but the meds cannot undo the fusion which has already occurred. It is also NOT a pain killer. Does the pain correspond with the fused parts of your spine or elsewhere? Basically I was told I would be fused in 5 - 10 years. With the medication the aim is about 15 to 30 years before fusion. It doesn't stop it, it slows progression. You need to ascertain if your pain is from inflammation or fusion.

I'm afraid taking you off and seeing what happens is the practice. If you are changed to another drug you will still have to come off the current drug for some months so your system can clear it before starting the next drug anyway. You also want to be very sure the drug does not work as there are only limited options. Once you have exhausted them, currently there is no other drug you can be given and you will then be left to get on with it yourself until such time as a new drug is discovered.

How much can you move and how active can you be? Have you had a long time of inactivity? Do you do the NASS recommended stretches every day? In reality, much as we would all love a wonder drug that makes AS go away, the best thing we can do is those stretches and move as much as possible. It's a real catch-22 as we are stiff and in pain so find it hard to move but we need to move to ease the stiffness and the pain!

Best of luck

Karen