Primary progressive MS (PPMS) affects about 10-15% of people diagnosed with MS.
What is primary progressive MS or PPMS?
Primary progressive MS (PPMS) is called this because from the first, or primary, symptoms it’s progressive. It’s usually diagnosed in people in their 40s.
Early symptoms are often subtle, like problems with walking, which develop over time. There will usually be few or no relapses with PPMS. Instead, disability will gradually increase. There can also be long periods where symptoms seem to be staying level.
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.
How is primary progressive MS (PPMS) different from other types of MS?
The difference between types of MS can be loosely organised by the way symptoms present and build up.
In relapsing MS there are distinct relapses. These can be mild or severe and people can recovery on their own or with treatments and therapies.
Secondary progressive MS (SPMS) develops out of relapsing MS as the body struggles to recover from the cumulative impact of relapses. Disability worsens independently of relapses. Thanks to DMTs fewer people develop SPMS and it can take longer to happen.
Primary progressive MS doesn’t develop from relapsing MS because there are no, or few, relapses to progress. We don’t know yet what’s damaging the nerves in PPMS, as little or no inflammation shows up in scans.
Active primary progressive MS (PPMS)
Some people also get relapses early on in primary progressive MS, or their scans show inflammation in the shape of new lesions. This is called active primary progressive MS (it used to be called 'progressive relapsing MS').
'Active' here means the person's immune system is still attacking the myelin around nerves in their brain or spinal cord, and causing inflammation. A relapse or new lesions on MRI scans are signs of this.
Managing primary progressive MS (PPMS)
There are many ways to manage 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 only work if their MS is active, meaning it's causing inflammation. Signs of inflammation are new or growing lesions on MRI scans of their brain or spinal cord, or if you still have relapses.
Ocrelizumab has been recommended across the UK to treat people with early primary progressive MS since 2020.
HSCT is only rarely offered on the NHS in the UK to people with primary progressive MS, and only if their MS is still active.
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.
Last full review:
We also update when we know about important changes.