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What does everyone's treatment plan look like?

While two people may have the same diagnosis for axial spondyloarthritis, they may have stark treatment recommendations from their healthcare team. Medication that may work for one person may cause someone else side effects or interact with medication for a comorbid condition. We have heard from our community and understand that finding the right treatment for you can be difficult. That's why we want to hear more from you with some questions to consider:

  • What does everyone's current treatment plan look like?

  • How are you feeling on this treatment plan?

  • How much or how often have you changed your treatment?

  1. Hello lovely community,
    Well I have been diagnosed with AxSpa few years ago in France and the specialist I saw told me I should take anti-TNF for it (biologics) But it doesn't work like that in the UK (where I live). You have to fail two DMARD before being put on biologics. So I did try, and failed two DMARDs, the second one quite badly as I ended up in hospital with neutropenia (basically very low immune blood cells level).
    After that, I was put on Embrel (etanercept) my first biologics, which worked really well but I had an allergic reaction to the drug. So I had to stop and switched to Humira. I have been taking Humira for six years now and I am lucky to say that it still works!
    Two years ago I managed to spread out the injections, after a discussion with my rheumatologists, as I was in remission with my symptoms of AxSpa for a while. I can manage to inject less today, and maybe one day I will be able to live without injection...?

    Aside of that treatment, I have been taking for around five years now a drug for neuropathic pain and to help to have a good quality of sleep. It's called Amitriptyline and it has provided me some pain relief during the day and restful nights. I also take paracetamol every day for the pain and it works well for me. These medications have been recommended to me by specialists in rheumatology. I feel my pain is overall controlled.

    I do a lot of self-management of course: weekly yoga, pilates, physiotherapy sessions and stretches, daily walks and regular meditation. I take hot bath with epsom salts and also massage tender areas. I tend to use natural products for body massage like arnica, tiger balm, cream with essential oils.

    I think I feel in control with this treatment plan. But I will revise it regularly, as I have done in the past, as research on treatments and management evolves so as my condition and my symptoms. I hope this helps!
    Thank you and take care.

    1. Hi everyone! Was diagnosed with AS a few years ago, and pretty much started on Humira right away. Sadly it did not work, I got shingles and other illnesses, and came off of it. Then I lost my insurance (in the US here) so I was on diclofenac but frankly, it was not very helpful and caused more issues than it was worth (like I couldn't mix it with other nsaids for acute pain).

      Right now I am managing with meditation (stress is a big for me), movement (daily stretching and exercise), nutrition, lifestyle changes (less alcohol, more sleep, change of job, etc). But I am thinking Cosentyx is next.

      I feel frustrated about insurance in this country, and I'm scared of going on biologics again but I know I'll probably need to.

      My pain/fatigue is extremely dynamic — some weeks/months are very good and some are horrific. I've yet to figure out exactly what triggers it, but I'm working on it.

      I'd love to hear about everyone else!

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