Managing relapses

Relapses can come out of the blue, and make life with MS unpredictable. There are steps you can take to manage them and plan for them, to minimise the effect MS has on your life as far as possible. One important step could be to take a disease modifying therapy (DMT). This can make you less likely to have relapses.

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What do I do if I think I am having a relapse?

If you think you are having a relapse, you need to contact your MS nurse or GP as soon as possible. Tell them about:

  • your symptoms
  • how you're feeling in general
  • any difficulties your symptoms are causing you.

It's important that other possible causes of symptoms are not missed, so you will probably be asked lots of questions about your symptoms, your general health and your activity over the last few days. 

Two MS nurses

If you are in regular contact with an MS nurse or neurologist, an appointment may be arranged for you at the neurology clinic. It is important for future treatment options that your neurologist is aware that you are having a relapse.

If you are not in regular contact with a neurologist or MS nurse, you should still make an appointment to see your GP. Your GP will then decide, in discussion with you, whether to refer you back to a neurologist.

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Treating relapses

The options for managing an MS relapse are:

  • treatment with high-dose steroids, either as an in-patient, a ‘day-case’ or at home
  • rehabilitation – after steroids, or without steroids being given
  • no treatment

Steroids

NICE says: "Any individual who experiences an acute episode (including optic neuritis) sufficient to cause distressing symptoms or an increased limitation on activities should be offered a course of high-dose corticosteroids." NICE also recommends that steroids should not be given more than three times in any year, and a course of steroids should last no longer than three weeks. 

Steroids are powerful drugs. They often get a bad name in the media because of their association with athletes and body-builders who use ‘anabolic steroids’ to boost their performance and ability. These are not the same as steroids used to treat MS. Used correctly, steroids can be a very good treatment for different conditions, including relapses in MS.

The way that steroids work in MS is not fully understood, but we expect them to:

  • reduce the inflammation
  • shorten the duration of the relapse
  • speed up recovery from the relapse

Steroids don't affect the outcome of a relapse – any difficulty or disability that might result from a relapse.

Side effects

There are a number of side effects of steroids – as there are with all drug treatments. The possible effects of the drug must be weighed against the possible side effects, ideally in discussion with your MS nurse, GP or neurologist. However, steroids are generally well tolerated when given to treat relapses, and side effects are normally short-lived:

  • mood alteration (up or down)
  • altered sleep pattern (often difficulty in falling asleep)
  • upset stomach or gut – including feeling nauseous
  • palpitations (faster than normal heart rate)
  • metallic taste in the mouth
  • increased appetite
  • weight gain (usually short-term)
  • flushing/ reddening of the face
  • ankle swelling
  • acne (temporary)

With regular or prolonged use of steroids, longer-term side effects can include:

  • thinning of the skin thinning of bones (osteoporosis)
  • increased blood pressure diabetes
  • very rarely, some people can experience severe damage to the hip (known as avascular necrosis of the hip)

Doctors don't recommended using steroids on a regular (‘pulsed’) basis or in progressive forms of MS, as studies haven't shown them to be effective.

How are steroids given?

NICE says that: "The course should be started as soon as possible after onset of the relapse and should be either: intravenous methylprednisolone, 1g daily, for between 3 and 5 days or high-dose oral methylprednisolone, 0.5g daily, for 5 days".

Oral steroids are usually in tablet form or sometimes liquid; intravenous steroids are through a drip. If you have difficulty swallowing, you may prefer a liquid steroid treatment. Treatment regimes vary between MS centres.

Usually when people choose to have intravenous methylprednisolone (given through a drip), the treatment is given in hospital, either as an in-patient (you stay in the hospital overnight) or as a day-patient (you come into hospital for the treatment then go home, returning each day). Occasionally, intravenous methylprednisolone is given in the GP surgery or at home. Your MS nurse or GP will know the procedure in your area. If you are prescribed oral methylprednisolone (taken as a tablet ), you will not usually have to attend hospital.

Rehabilitation

Rehabilitation can combine many different approaches to managing MS – physiotherapy, occupational therapy, dietary advice, employment services, support for care at home, and so on. Whatever services are involved, the aim is to lessen the impact of MS on someone’s life.

You might benefit from rehabilitation after a relapse, whether or not you had steroids. There is some evidence to show that recovery from a relapse is improved by having rehabilitation as well as steroids.

An MS nurse, district nurse or GP sometimes acts as a central point of contact for you. They can help ensure referrals are made to other professionals and answer your questions about rehabilitation services.

No treatment

You might decide not to have treatment for a relapse, though it's a good idea to discuss this with your healthcare team. For milder, sensory relapses (such as tingling or numbness), this is often the preferred option.

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Should I rest or exercise when I am having a relapse?

There's no easy answer to this question - there's evidence that a certain level of exercise can help fatigue in MS in general, but there hasn't been any research into the effect exercise has on relapses. 

Fatigue is often worse during a relapse, so you may need to rest. Also, it is important to prevent your core temperature from rising as this can make you feel worse. But everyone's MS is different, so trial and error - and getting advice from your doctor or physiotherapist - are the keys to managing relapses.

After a relapse - what do I do now?

Recovery from a relapse can take time – weeks or possibly months. Symptoms from early relapses can disappear completely, but sometimes you might be left with symptoms or some difficulty. This is more likely with relapses later on in your condition.

Make sure you speak to your MS nurse or GP about this, as there may be treatments, such as physiotherapy, rehabilitation or medication that can help. 

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Planning ahead

Putting a few simple things in place while you are in remission could make things easier for you and those around you if a relapse happens. Think about:

  • A contact number (GP or MS nurse) who you can call for medical advice
  • Do my friends or family know who to contact and what to say if I am taken ill? This might include informing your workplace or school as well as health or social care professionals.
  • In case I go into hospital, have I got a list of drugs that I usually take (for MS or any other condition), or any other details that might affect how I receive care?
  • Setting up a power of attorney (PA)  as someone could be temporarily unable to communicate their wishes while experiencing a relapse.

What we know about how MS affects people is changing. It's now clear that even when you're in remission, with no relapses, MS may still be attacking your body. It can be causing damage even though you might not notice the signs of it straight away.

So, if you're not already taking one, you might want to think about taking a disease modifying therapy (DMT). Although they work better if you start taking one close to when you're first diagnosed with MS, starting one later can also have benefits.

Find out more about disease modifying therapies

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