Treatment: IVIg and plasma exchange

Two treatments are proven to work in GBS. They work about equally well, and in practice the choice comes down to what is available and what your situation allows.

Both do the same kind of job: they slow the attack. Neither repairs damage already done. Your body does that itself.

Immunoglobulin (IVIg)

An infusion of antibodies made from the plasma of thousands of donors. The standard dose is 2 grams per kilogram of body weight, spread over five days. At 70 kilograms that is 140 grams in total, 28 grams a day.

It is usually the first choice, because it needs no special equipment or central line.

Side effects are usually mild: headache, fever, chills, nausea. Slowing the infusion often helps. Rare but more serious are kidney problems, aseptic meningitis and thrombosis.

Plasma exchange

Your blood is passed through a machine that separates plasma from blood cells. The plasma carries the antibodies attacking your nerves. That plasma is discarded and replaced, usually four to five times over about two weeks.

It works best when started early. It needs a line into a large vein and can lower your blood pressure. It is more involved than IVIg, and not every hospital offers it.

What does not work

Also not useful: giving IVIg and plasma exchange one after the other. The combination is no better than either alone.

When should treatment start?

As soon as possible, and preferably within two weeks of the weakness starting. The earlier, the more nerve tissue there is to save.

Treatment is recommended once you can no longer walk independently. Milder cases that are deteriorating quickly are often treated too.

And if you are not improving after the course?

This is the hardest part of this page, and I am going to be straight with you, including where it is not what I wanted to hear myself.

A second IVIg course is not a proven answer in ordinary GBS. In the SID-GBS trial, people with a poor prognosis received either a second course or a placebo. The second course produced no better recovery, and more adverse events. That is solid research and it deserves an honest account, including on a site like this one.

But here is exactly where the trap sits, and it costs people months:

What you may reasonably ask for in that situation, and what a good neurologist would do unprompted:

1. Reassess whether this still fits ordinary GBS.
2. A repeat nerve conduction study, which shows far more after some weeks than in the first days.
3. Record exactly how many times you have deteriorated, and on which day after your first symptoms.
4. Consultation with, or referral to, a specialist GBS and CIDP centre.

What else is needed

Immune treatment is only part of the care. These shape how you come out of it, and they are more easily forgotten:

• Monitoring your breathing for as long as the illness is still progressing
• Pain treatment. Nerve pain responds poorly to paracetamol and anti-inflammatories. There are drugs meant for it. Ask, and do not accept “that comes with the territory”
• Clot prevention for as long as you are not walking
• Preventing pressure sores and stiff joints, with repositioning and passive movement
• Physiotherapy from day one, even when you can do nothing yourself. Passive movement keeps joints supple for later
• A swallowing assessment if you are choking, to prevent pneumonia
• Attention to your mind. Anxiety, confusion and even hallucinations occur in the acute phase, especially in intensive care. This is a known phenomenon, not a sign you are losing your mind