Over years of talking to people with AS, NASS find that many people with AS have times when their symptoms seem to worsen or flare up.
Rheumatologists generally accept that people with AS do experience times when their AS worsens and times when it improves again.
There has been little research carried out on the pattern of flares among people with AS. Flares in AS remain poorly understood. It is a subject which NASS and our members would like to be given a higher priority.
There is currently no clear definition of what a flare actually is in AS. It could be:
- An increase in disease activity or symptom scores
- An increase in symptoms meaning that people seek additional medication or changes in medication
- Additional symptoms such as iritis
- An increase in inflammatory markers in the blood - although in AS rheumatologists agree that there is a poor association between inflammatory markers in the blood and disease activity
In 2008 a group of rheumatology consultants in the UK with an interest in AS carried out a pilot study asking 114 people with AS about their flares. The vast majority (96%) of the people included in the study said they experience flares. However, there were wide variations in the time flares were estimated to last:
- 40% said their flares last for days at a time
- 32% said they lasted for weeks
- 29% said they lasted for months
Most people in the study described experiencing AS symptoms on a daily basis, with flare ups worsening the symptoms rather than having no real symptoms between flares.
Click here If you would like to read the full clinical paper, which appeared in Rheumatology.
Burn-out in AS - fact or fiction?
Some people with AS are told by their rheumatologist that their AS will probably ‘burn out' eventually. Occasionally a time-scale is put on it though usually this is just a hope for some time far off in the future.
By ‘burn out' rheumatologists mean that the inflammation will stop along with most of the pain, tiredness and stiffness. Some changes such as restricted movements will be unchanged even if the inflammation has settled.
There are surprisingly few real facts about whether burn out does actually happen in AS. This is partly because measuring inflammation in the spine has been and remains a pretty inexact science. This is true in spite of MRI, BASDAI and so on.
A study by Dr Andrei Calin found that AS only seems to burn out or become inactive in very few people. Other experts disagree with this.
When thinking about burn out there are two issues to bear in mind:
Burn out versus time between flare ups
Some people's AS really does seem to burn out or become inactive after a period of years. For a few lucky ones this may be after only a very few years so that very little spinal damage has occurred but for others it might not happen until old age.
Now that rheumatologists use MRIs more frequently they have found that even when we think the inflammation has settled there may still be scan changes suggesting that it has not. Rheumatologists don't fully understand what this means yet.
Other people find their AS waxes and wanes over time. After a period during which they seem to be symptom free and may hope their AS has burnt out, it flares again.
Increased tolerance of symptoms
Many people with AS eventually come to terms with their symptoms - especially if they are not as severe or disturbing as they were in the early years - and say they feel OK.
For some people their AS might truly be inactive but for many others it means only that things have reached a relatively calm steady state. The important difference between this and burn out is that sometimes people who think their AS has burnt out will respond very well to effective treatment.
Conclusion of current thinking on burn out
AS probably does burn out and become truly inactive for a few people but we cannot predict in whom or when this will occur.
Much more often burn out simply means that people are now able to tolerate symptoms which may have been ongoing for many years.
NASS would like to hear from members about your experience of flares and burn out in AS
Members always tell us how interesting and useful they find it to read about other people's experience of AS so if you have any experiences of flares or burn out then do let us know. We'd be really interested to hear:
- How do they affect you?
- How do you know you are experiencing a flare up?
- How often do you get flare ups?
- How have things changed over time?
- What helps you when you are experiencing a flare?
- Do you think your AS has burnt out? Why?
You can help with this by making your own suggestions and comments in the box below. You can write as much or as little as you want in the box. We receive all the comments and publish them on the page, usually within 1 working day so your comment won't appear immediately.
If you have any queries contact our Information Officer.
Last reviewed: April 2011