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Secondary progressive MS

Secondary progressive MS (SPMS) is a stage of MS which comes after relapsing remitting MS for many people. With this type of MS your disability gets steadily worse. You're no longer likely to have relapses, when your symptoms get worse but then get better.

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 diagnosed?

Secondary progressive MS can be hard to diagnose. Before a neurologist will tell you you've got this kind of MS, they'll look for signs that your MS has been getting steadily worse for six months.

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 beginning.

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

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.

Can you still get relapses with secondary progressive MS?

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

If you do have relapses, recovery 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.

Managing secondary progressive MS

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

Steroids

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

Find out more about managing relapses

Disease modifying therapies

If you have secondary progressive MS and you still get relapses, or inflammation on your MRI scans, there's two DMTs available: a beta interferon (Extavia) and siponimod (Mayzent).

If you think they could help you, ask your neurologist, MS nurse or GP for more details.

HSCT

HSCT, also known as stem cell therapy may be able to help some people with progressive MS who still have active inflammation (either relapses or lesions on an MRI).

But it can’t regrow nerves or repair damaged myelin. So it can’t help people with advanced progressive MS who don't have relapses or show signs of inflammation on an MRI.

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