I have recently been diagnosed with Ankylosing Spondylitis, I have been on Naproxen for years but it doesn’t seem to help anymore. I struggle sleeping for the pain. I don’t qualify for biological medicine at this stage. What is a good drug to suggest to my specialist?
Thank you in anticipation of your help.
Morning , why do you not qualify as if your under rheumatology they are guided by nice guidelines . Have a word to see if they can change your from the naproxen to another . Also your pain management needs to be looked at . Don't be quiet and plod on as this is not good as you can be doing quite a bit of damage by not being pro active . Also I found as advised that I walk as much as I can even if it takes me ages as I feel less pain moving , but sitting kills me . Wish you well 💐
Thank you for your message and advice. I do not qualify for biological meds’ as I didn’t test positive for the HLA B27 gene. I walk for an hour every morning to get me going and then try to stay active most of the day as like you the pain is so much worse when I rest.
I see the consultant in 10 days so if make a bit of noise as you suggest and hopefully I will get somewhere.
Thank you 😊
I did not test positive for HLA B27 and zero negative for Ra , I had 15 years before I got diagnosed by the end I couldn't walk was in a wheelchair . I couldn't use crutches because of hands and elbows . I was really lucky in the end the pains consultant referred me to rheumatologist who along with my doctor had me on steroids and literally overnight I was able to mobilise I reacted really badly to arcoxia BP through the roof . I was put on Humeria and have not looked back I'm living my life again . No it's not brilliant but compared to the existing I had before . Now however I have had problems with a new consultant who doesn't agree with the previous diagnosis . She has never examined me but has stated I don't have in her opinion AS But wouldn't say what it is . I have gone to PALS and have now been referred to another consultant . My X-rays show sacro illitis and my MRI showed shiny changes ? . I now don't know what to say or do but o know I can't go back to the person I was . You really need to look at your pain relief and the anti inflammatories you can take . It is so hard to get biologics I know O fought hard and so did my consultant for mine . I do wish you well x
Thank you for your kind wishes and for sharing.
Oh wow you have had a very tough time, I am so pleased you are mobile again.
My MRI showed Spondyloarthoropathy, Romanus Lesions, multiple vertebrae with thickening of the anterior longitudinal ligaments and bone marrow oedema in the iliac bones. From that I was diagnosed with AS.
I will kick up some noise as I am deteriorating day by day and do not want to end up in your situation before they do something.
Thank you for all your help and best wishes for you in the future.
Good luck xx
You might find that changing onto another non-steroidal anti-inflammatory helps to enable you to exercise and keep mobile, if you don't qualify for biologics (and I know what a struggle that can be!).
And you might ask for targeted physio? Join the local AS group? (our local group have regular sessions in the hydrotherapy pool).
Thank you I will look into a local group. I have physio but I am so much worse after being there. The hydrotherapy sounds a great idea, thank you I will look into it. 😊
Thank you very much for the link, I will look into what’s on offer locally, I so need something.
My next appointment is in 10 days, I will let you know how I go on with new medication.
Have you been in touch with NASS - National Ankylosing Spondylitis Society? They've got a wealth of information to help you as they specialise in AS. nass.co.uk/about-nass and their helpline is 020 8741 1515
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