Secondary progressive MS
In the past, before DMTs came along, it usually 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 those that do, this could take longer to happen
Secondary progressive MS can be hard to diagnose. Before a neurologist will tell you that 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 remitting 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.
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What sort of changes might happen?
Usually with secondary progressive MS your disabilty 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.
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 are treatments and ways of managing symptoms which can help manage many different MS symptoms, including drug treatments, physiotherapy and exercise.
If you have secondary progressive MS with relapses, then these can be treated with steroids. Find out more about managing relapses.
Disease modifying therapies
Guidelines produced by the Association of British Neurologists say that the disease modifying therapy beta interferon should be offered to people with secondary progressive MS if they're still having relapses, and if it's clear these relapses are the main reason why their disability is getting worse.
If you think this may be the case, ask your neurologist, MS nurse or GP for more details.
HSCT, also known as stem cell therapy, has been shown to be less effective for people with progressive MS if they're not getting relapses or inflammation in their brain.