Relapse: when it gets worse again

If you found this page because things are getting worse again: you are not imagining it, you are not being difficult, and this is a known, described and documented pattern.

This is the most important page on this site. Not because it gets the most traffic, but because this is where the most time is won or lost.

Two very different things that look identical

Ordinary GBS

one low point, then recovery

treatment: 1x

Relapsing course

a little deeper each time

treatment: 2x

You were treated with IVIg or plasma exchange. You improved. Now you are getting worse again. There are two explanations, and they call for opposite responses.

1. A treatment-related fluctuation (TRF)

The treatment wore off before the attack had fully burned out, so you dip back down. This usually happens within eight weeks of your first symptoms, and usually no more than once or twice.

This is still ordinary GBS. Retreatment is common, and recovery then continues.

2. Acute-onset CIDP (A-CIDP)

You do not have GBS. You have CIDP, a condition that started as an acute attack but does not stop on its own. CIDP is chronic: the inflammation keeps going, so it needs maintenance treatment, not one course.

Roughly 5 percent of people initially diagnosed with GBS turn out to have A-CIDP.

The rules that make the distinction

Dutch research, carried out in Rotterdam, produced two practical rules. They are in the international guidelines and they are concrete enough for you to apply yourself.

Think A-CIDP rather than GBS if:

1. You have deteriorated three times or more after an earlier improvement or stabilisation, or
2. You are still deteriorating more than eight weeks after your first symptoms.

A few further pointers that fit A-CIDP better than GBS:

• You could still walk at your worst point
• You never needed mechanical ventilation
• Your cranial nerves were spared: no facial weakness, no swallowing problems
• Weakness is spread fairly evenly between arms and legs, rather than mostly in the legs

None of these proves anything on its own. Together they form a pattern, and that pattern deserves to be taken seriously.

Why this goes wrong so often

A few reasons, and it helps to know them before you walk into the conversation.

Nobody is counting. Relapse number three feels like a catastrophe to you, but it appears in your records as “fluctuating course” if nobody bothered to count. So count yourself. Put dates on paper.

The eight weeks get counted wrong. They run from your first symptoms, not from your admission and not from your last course of treatment.

Waiting feels safe and is not. “Let us take another look tomorrow” sounds careful. For a condition that keeps going, it is not. A day of waiting is a day of inflammation.

GBS is rare, A-CIDP rarer still. Most neurologists see this a handful of times in a career. That is not an excuse, but it is why consulting a specialist centre makes such a difference.

If it does turn out to be CIDP

Then the approach changes, and there is good news too: CIDP is treatable, and there are more options than with GBS.

• Maintenance IVIg, at fixed intervals rather than a single course
• Corticosteroids, which do work in CIDP, unlike in GBS where they do not
• Plasma exchange, if the other two are not enough
• Further options exist if the response is inadequate, discussed with a specialist centre

The goal shifts as well. With GBS you wait for recovery. With CIDP you look for the lowest dose and the longest interval at which you stay stable. That is a search, it takes time, and it is a completely different conversation from the one about waiting.

What to do now

1. Build a timeline. Date of first symptoms. Date of every treatment. Every date it got better and every date it got worse. One page is enough.
2. Count your relapses. At three, or at deterioration beyond eight weeks, raise the A-CIDP question explicitly.
3. Ask for a specialist consultation. Many centres will advise your team without you being transferred anywhere.
4. Put your question in writing and ask for the answer to go in your records. A written question gets a different answer from one asked in a doorway.