Secondary progressive MS (SPMS)

In secondary progressive MS your immune system no longer attacks the myelin that covers nerves in your brain or spinal cord (or this happens only very occasionally). So usually relapses end and doctors see no new lesions on your MRI scans. Instead something we don’t fully understand is now causing nerves to break down and stop working (‘neurodegeneration’). This in why your symptoms carry on slowly getting worse.

In the past, before disease modifying therapies (DMTs) came along, it took around 20 years for relapsing MS to change into secondary progressive MS. But thanks to today's MS drugs this is changing:

• fewer people are likely to go on to secondary progressive MS
• for people who do, it could take longer to happen

How is secondary progressive MS (SPMS) diagnosed?

Secondary progressive MS can be hard to diagnose. To get this diagnosis you must have had relapses in the past, and now your disability has been getting steadily worse for at least six months. Things getting worse mustn't be linked to any relapse you've had.

It's possible that, when you're first diagnosed with MS, you could be told you have secondary progressive MS. This is rare but can happen if symptoms of the relapsing phase of your MS weren't diagnosed correctly or were ignored.

Secondary progressive MS is different from primary progressive MS, which is progressive from the start. ‘Progressive’ here means that disability and symptoms keep getting worse.  

What sort of changes happen when you move from relapsing to secondary progressive MS (SPMS)?

Usually with secondary progressive MS your disability or other symptoms gradually get worse. The old pattern of you getting relapses followed by you getting better usually comes to an end. Some people may still get relapses but they don't tend to make a full recovery afterwards.

You might notice more difficulties with getting around than before, or other symptoms might get worse. Changes can happen very slowly though. It might take some time before you and your doctor are sure you have secondary progressive MS.

Everyone's MS is different - even if someone else has secondary progressive MS, they're likely to be affected in an individual way.

If you take a DMT, your neurologist might talk to you about coming off it once your MS becomes secondary progressive. This is because DMTs work by dampening down inflammation, stopping relapses and preventing new lesions. But these no longer happen in most people with progressive MS.

Can you still get relapses with secondary progressive MS (SPMS)?

Some people still get the occasional relapse when their MS becomes secondary progressive. That can make it harder to work out whether your MS is relapsing or secondary progressive.

If you do have relapses, this means you have active secondary progressive MS. 'Active' here means your immune system is still attacking the myelin around your nerves, causing inflammation. A relapse is a sign of this inflammation. Another sign of it is when your neurologist can see new lesions on your MRI scans.

Recovery from a relapse can take some time. It can be hard to tell whether symptoms are due to your MS progressing (getting steadily worse). If they are, these symptoms might not go away. But if your symptoms are the lingering effect of a relapse, they might go with time.

What comes after secondary progressive MS (SPMS)?

There’s no other type of MS that comes after secondary progressive MS. But your symptoms will probably change over time. There are treatments and support to help you manage your secondary progressive MS.

Managing secondary progressive MS (SPMS)

There's many ways to manage your symptoms, including drug treatments, physiotherapy and exercise.

Wellbeing and rehabilitation

Healthy eating and appropriate exercise is a kind of ‘self management’ and is useful to many people with secondary progressive MS.

When symptoms change, different people might be best placed to help.

For example:

• trained people in NHS services can offer you rehabilitation. This is help to, as much as is possible, get back the function of a part of your body that you may have lost. They’ll help you to stay as active as possible and to get back your independence
• 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.

Steroids

If you have secondary progressive MS with relapses, they can be treated with steroids.

Find out more about managing relapses

Disease modifying therapies

Some people with secondary progressive MS still get the occasional relapse, or MRI scans of their brain or spinal cord show inflammation (new or growing lesions). This is called active secondary progressive MS. If you have this, one disease modifying therapy (DMT) can slow down how fast your symptoms or disability get worse. Its name is siponimod (Mayzent).

And in England, new rules to get siponimod on the NHS mean more people qualify to get this drug than was the case before. If you wonder if this drug might help you, ask your neurologist, MS nurse or GP for more details. 

The beta interferon Extavia was also available to people with active secondary progressive MS. But Extavia was withdrawn from the market in 2022. This was because its makers decided to no longer produce it, not because of any safety issues.

HSCT

HSCT is a kind of stem cell therapy. It can’t regrow nerves or repair damaged myelin. So it's unlikely to help people with advanced progressive MS. HSCT is rarely offered on the NHS in the UK to people with secondary progressive MS, and even then only if their MS is still active. Your MS is active if you still get relapses, or there are new or growing lesions on your MRI scans.

Drugs now in trials

Several drugs are now being tested to see if they can help all people with secondary progressive MS. These include drugs to repair myelin, protect nerves, or slow down progressive MS that’s not active.

What support can I get?

You're not alone. Our MS Helpline team can help you answer all your questions about secondary progressive MS, including ones about financial support.

We also have a progressive MS booklet you can download.

And you can find support on our forum and through our network of local groups. Your MS Team (your neurologist or, if you have one, your MS nurse) should also give you ongoing information and support tailored to meet your changing needs.