Primary progressive MS (PPMS)
Primary progressive MS (PPMS) affects about 10-15% of people diagnosed with MS.
It has this name because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden relapses.
In primary progressive MS, early symptoms are often subtle problems with walking, which develop – often slowly – over time.
Whatever symptoms someone experiences, the way they progress can vary – from person to person and over time. So, although in the long-term symptoms might get gradually worse, there can be long periods of time when they seem to be staying level, with no noticeable changes.
This type of MS is usually diagnosed in people in their forties or above – older than the average age for relapsing MS – but it can be diagnosed earlier or later than this.
Equal numbers of men and women have primary progressive MS. This is different to relapsing remitting MS (RRMS), where more women than men have the condition.
People with primary progressive MS can experience many of the same symptoms as those with relapsing remitting MS.
Diagnosing primary progressive MS (PPMS)
To get a diagnosis of primary progressive MS you must have had no relapses, but your disability must have got worse over at least a year. An MRI scan must show two or more lesions in different parts of your brain or spinal cord. These must have happened at different times. A lumbar puncture must also show signs of MS (antibodies) in the fluid around your spinal cord.
Active primary progressive MS (PPMS)
Early on in their primary progressive MS some people also get relapses. This is called active primary progressive MS (it used to be called 'progressive relapsing MS'). 'Active' here means that the person's immune system is still attacking the myelin around nerves in their brain or spinal cord, and causing inflammation. A relapse is a sign of this inflammation. Another sign of it are new lesions on their MRI scans.
Managing primary progressive MS (PPMS)
There are many ways of managing the symptoms of primary progressive MS.
Trials are also testing drugs to see if they can slow down how fast people with progressive MS see their disability get worse. One drug called ocrelizumab (Ocrevus) can do this for some people with early primary progressive MS.
This drug can work only if their MS is causing inflammation - that means they get relapses, or MRI scans of their brain or spinal cord show new lesions.
Since 2020 ocrelizumab is recommended across the UK to treat people if they have early primary progressive MS. Visit our ocrelizumab page for more details on who qualifies to get it.
HSCT might be another option for a small number of people with progressive MS and who still have inflammation.
Research continues in this vital area.
Wellbeing and rehabilitation
Healthy eating and appropriate exercise is a kind of ‘self management’ and is useful to many people with primary progressive MS.
When symptoms change, different people might be best placed to help.
- a physiotherapist and occupational therapist can often help to minimise the effects of muscle weakness or unsteadiness on your feet
- a dietician might help you find ways to eat healthily if you're less mobile
- an occupational therapist can help make adjustments around home or work to make things easier.
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