Guillain Barre Syndrome Life Expectancy

The outlook (prognosis) for most people with Guillain-Barre syndrome (GBS) is good. Most people survive it, and people who recover from it have a normal life expectancy. It can still be life-threatening while the illness is active, and some people are left with long-term problems.

Survival rate

Published figures vary. A review on the US National Library of Medicine's NCBI Bookshelf puts the death rate at 3% to 7% overall, and at about 20% for people who need a ventilator. Cleveland Clinic gives a lower figure, saying fewer than 2% of people die during the acute phase, when symptoms are at their worst.

Causes of death include pulmonary embolism (a blood clot in the lungs), acute respiratory distress syndrome, pneumonia and other infections, and cardiac arrest. These complications can happen during recovery as well as in the acute phase, so people need monitoring throughout.

Why GBS can be dangerous

GBS happens when the immune system damages the nerves. It can affect the muscles used for breathing and the nerves that control heart rate and blood pressure.

• Breathing: Mayo Clinic says up to 22% of people need a breathing machine within the first week of hospital treatment. Cleveland Clinic says respiratory failure affects up to 30% of people with GBS.
• Heart and blood pressure: Problems with the automatic functions of the body occur in about two-thirds of cases, with varying severity. They can include abnormal heart rhythms and unstable blood pressure.
• Speed of onset: Symptoms usually get worse over the first 2 to 4 weeks. Most people are at their weakest within two weeks of the first symptoms, and about 90% by the third week.

This is why GBS is treated in hospital, with close monitoring of breathing, heart rate and blood pressure.

What affects the outlook

The chance of dying is higher in older people and in people with severe symptoms. Factors linked to a poorer outcome include:

• Older age
• Other health conditions
• Severe disease, or heart and lung complications
• A Campylobacter jejuni infection before GBS, especially with diarrhoea
• Axonal forms of GBS, in which the nerve fibres themselves are damaged

There is no cure, but the main treatments are intravenous immunoglobulin and plasma exchange. Both are equally effective if started within two weeks of the first symptoms. Steroids have not been shown to work.

How long recovery takes

Recovery can take anywhere from a few weeks to a few years. Most people start to recover two to three weeks after symptoms begin.

• Walking: After immunotherapy, about 77% of people can walk independently at 6 months and 81% at 12 months.
• Full recovery: More than half of people recover fully within a year. Some keep improving after that.
• Hospital stay: This usually lasts several weeks and sometimes several months.

The figure of "90% recover within four weeks" that is sometimes repeated is not supported by these sources. The 90% figure refers to people reaching their weakest point by the third week.

Long-term effects

Most people recover completely or are left with only minor weakness, numbness or tingling, but lasting problems are not unusual. Cleveland Clinic says about 30% of adults, and even more children, still have some muscle weakness three years after diagnosis.

Long-term problems can include:

• Muscle weakness or needing help to walk
• Tingling or numbness in the hands and feet
• Nerve pain
• Fatigue
• Anxiety and depression

Can GBS come back?

Recurrence is uncommon, affecting fewer than 5% of people. It can happen years after symptoms ended. Anyone who has recovered and notices symptoms returning should contact their specialist straight away.

When to get help

Contact a doctor urgently if you think you may have GBS, for example if you have tingling or weakness that is spreading, especially within a few weeks of an infection such as flu or a stomach bug. Many of these symptoms have other causes, but they should still be checked.

Call emergency services if breathing becomes difficult, if one side of your face droops, if you have trouble swallowing or slurred speech, or if you can't lift one or both arms.

GBS is rarely linked to vaccination, and it is not contagious or inherited.