Active MS and MS with progression
As well as the main types of multiple sclerosis (relapsing remitting, secondary progressive, and primary progressive), doctors and researchers might use other words to describe it.
You may be told your MS is one of the following:
If you understand how your MS fits these descriptions, it can help you know if there’s a disease modifying therapy (DMT) - or a choice of several - available to you.
What is active MS?
Active MS means that your immune system is attacking nerves in your brain or spinal cord. Or that it’s done that in the last few months. This is most common with relapsing remitting MS, but it can happen in some people with progressive types of MS, too.
Active MS can show up in two ways:
- as a relapse
- as new or growing lesions (areas of damage around nerves) on your MRI scans
What’s happening in active MS?
When someone’s immune system attacks nerves in the brain or spinal cord, this causes inflammation. During an attack the fatty coating that protects nerves gets stripped away. That coating is called myelin.
When myelin is missing, the nerve fibre inside can become damaged. And that makes it harder for signals to pass along it, causing the symptoms of MS.
If MRI scans show inflammation – a sign that your MS is active – your neurologist will probably recommend that you take a DMT. They might recommend this even if your MS isn’t causing you symptoms. That’s because a scan can show inflammation even when it’s not causing you symptoms. But the inflammation still causes silent damage that you can’t see or feel, and a DMT can try to limit that.
What does ‘not active’ MS mean?
If you’ve gone some time without relapses, or your MRI scans show no new or growing lesions, then your neurologist might describe your MS as ‘not active’. That doesn’t mean you have no symptoms – you might still have some left over from earlier attacks on your nerves. And it doesn’t mean your MS has gone for good. It just means there are no signs of recent attacks by your immune system.
What is MS "with progression"?
When your MS symptoms and disability are gradually getting worse, but inflammation isn’t the cause, doctors might say you have MS "with progression". Or they might say your MS “is progressing”. Something we don’t yet understand is making nerves slowly break down.
You could be told your MS is with progression if you have secondary or primary progressive MS.
How do I know if I have MS with progression?
If your symptoms and disability are gradually getting worse, this could be a sign that progressive nerve damage is happening. This damage might also happen without you noticing any obvious signs. But a doctor might see subtle signs of it on scans of your brain or spinal cord.
What does MS "without progression" mean?
This might sound strange. You can be told you have progressive MS, but that it’s "without progression". It means there are no signs that your MS is getting worse at the moment – perhaps since your last appointment with the neurologist.
This doesn’t mean your MS has gone away or that nothing is going on. There just aren’t clear signs of any changes.
Can MS be both active and "with progression"?
Yes, MS can be both active and with progression:
- it’s gradually getting worse, so it’s "with progression"
- but it’s active too. Either there’s been a relapse or your neurologist can see new inflammation on your latest MRI scan (old lesions have got bigger or new ones have appeared)
- MS that’s both active and with progression can happen with primary or secondary progressive MS
How can I treat active MS?
All the disease modifying therapies (DMTs) we have at the moment work by stopping your immune system from attacking myelin, or by dampening down inflammation. So we think they only help against active MS. This covers the vast majority of people with relapsing remitting MS. And a small number of DMTs can help with progressive MS which is active.
How can I treat MS with progression?
If your progressive MS is also active, then you might get a DMT on the NHS. That’s true whether it’s currently "with progression" or "without progression". Four treatments might be available to you:
- for active secondary progressive MS there’s siponimod or the beta interferon Extavia
- for active primary progressive MS there’s ocrelizumab
- and HSCT might be a possibility for both
Read more about these treatments
It’s important to talk to your neurologist about treatment even if you have no clear signs of active inflammation such as a recent relapse. You could have active inflammation that only shows up on an MRI scan.
Treatment isn’t only about DMTs. There are other treatments and ways to manage your MS symptoms - whether they’re caused by inflammation or progression.
Research is also making progress in finding drugs to protect nerves and repair myelin.
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