Diagnosed early and with the right treatment, you can live well with axial spondyloarthritis.
Perhaps you’ve spotted the signs of symptoms of axial SpA yourself? Or maybe you’ve been told by a health care professional that you might have the condition?
If you think you have axial SpA, knowing the steps you need to take to get a fast diagnosis can really help you and help your doctor get the right answer.
See your GP
The first thing to do, is book an appointment at your GP surgery. If you’re experiencing persistent lower back-pain, the earlier you see your GP the sooner they can get the ball rolling if they think that a diagnosis of axial SpA needs to be investigated.
If you haven’t used our symptom checker already, you should use it to see if you should speak to your GP. Once you’ve answered the questions you can print out the results to show your GP.
Take some notes along to your appointment. You might see a GP or a physiotherapist, known as a first contract practitioner (FCP). It really helps them if you can tell them about all the symptoms you’re experiencing and when those occur.
Also, if you’ve ever had other symptoms, such as waking in the night in pain, gut problems, eye problems or skin problems like psoriasis let your GP or FCP know. Any information you can provide will help.
Be prepared to talk about your family history. Does anyone in your family have axial spondyloarthritis, ankylosing spondylitis or any other inflammatory condition? Or does anyone live with persistent back-pain, even if they don’t have a diagnosis?
Watch our video from Danny Murphy GP to find out how to prepare for your appointment.
If a GP or FCP thinks you might have axial SpA they will usually refer you to a rheumatologist. In some areas you might see someone from a back and joint pain (musculoskeletal) triage service first.
They may then investigate your symptoms in more detail by:
- Discussing the signs and symptoms your experiencing
- Undertaking a physical examination
- Doing an MRI scan or an X-Ray
- Doing blood test to check for signs of inflammation and a gene called HLA B27, which is often, but not always, found in people with axial spondyloarthritis.
Your rheumatologist will use this information to make a diagnosis and discuss your treatment plan.
Want advice on how to prepare for your appointment? Then watch this video by Dr Elizabeth Reilly.
You’ve been diagnosed. What treatment will you receive?
Not everyone will receive the same treatment and your rheumatology team will work with you to find something that’s right for you.
A common first step is for people to be prescribed with anti-inflammatory medication. It is also important to work with a physiotherapist and get a personalised exercise plan. Exercise and movement are as important in the management of axial SpA as medication.
If anti-inflammatory drugs don’t work for you, you may be prescribed a targeted treatment. Talk to your rheumatologist about this option if you are concerned that your initial treatment isn’t working.
People with the condition often experience flares. This is where symptoms get worse for a short period of time and people experience fatigue or extreme exhaustion. Your rheumatologists should talk to you about a plan for dealing with flares.
Looking after your emotional wellbeing
Finding out that you are living with an incurable condition can be difficult for anyone to deal with. It’s as important to look after your mental health, as it is your physical health. Watch this video from Anxiety UK to get some tips on looking after you emotional wellbeing.
Once you’ve been diagnosed and have a treatment plan that works for you, you’ll continue to get support.
You should be offered at least an annual check-up by your rheumatologist, during which they check your posture and talk to you about the levels of pain you’re experiencing.
You will also have a team of healthcare professionals who are all there to support you. This could include rheumatology nurses, occupational therapists, podiatrists if you’re experiencing problems with your feet and mental health specialists when you need support with your emotional wellbeing.
Everyone with axial SpA should also have support from a physiotherapist. They’ll be able to give you a personalised exercise plan and you’ll see them as part of your annual check-up. You should also be able to ask for an appointment if there are any specific issues you want to discuss.
Want to learn about other people’s experiences of life with axial SpA? Check out our blogs.
Don’t forget to check-out the guides on the NASS website to find out more about living well with axial SpA. www.nass.co.uk/resource/nass-guidebook/