Medical Experts

Hi Dawson: Yes, one definitely can make a full recovery from GBS. About 70% of patients recover full strength although some people do notice persistent fatigue. Unfortunately, recovery can be slow, taking up to 2 years. Pain also improves, in most cases completely. You are very early in the recovery phase, just 3 months from the initial illness, so it is not surprising that you still have some weakness and pain. You had the correct treatment (IV immunoglobulin) and are continuing to get physoiotherapy treatment so you are doing everything right. Keep it up and I would expect that you will continue on the road to recovery, hopefully complete recovery.

I am as much in the dark as you are. The government has not yet released the criteria determining who will be eligible or when. I should mention that people who have had GBS are not immunocompromised and people with CIDP are only immune compromised if they are on active treatment with immunosuppressive drgus such as steroids, azathioprine (Imuran), cyclophosphamide (Cytoxan) and others. If they are not currently receiving any treatment or are being treated with immune globulin they will not be immunocompromised.

It is not appropriate for me to comment on how another hospital is doing things. You should take this up with the doctors who are managing your daughter’s care.

You pose a very difficult question. I would normally say, without hesitation, that former GBS patients should get vaccinated but having had what certainly sounds like neuropathic symptoms following the initial dose does give one pause. I think you need to bear in mind that every decision any doctor makes is a calculated assessment of risk versus benefit. If one has a life-threatening illness a life-threatening treatment may be justified but a risky treatment for a trivial illness would not. In the case of all vaccinations, the risk from getting the disease is 100’s to 1000’s times greater than the risk from getting the vaccine. I think in your case the balance is still in favour of giving the 2nd dose. Every study has shown that the risk of the vaccines triggering an initial attack or a recurrence of GBS, particularly with the Pfizer vaccine, is extremely small, Conversely, the risk of getting GBS following COVID infection, while still very small, is many times greater than any risk attached to the vaccine. With the delta variant inching farther south every day, and with it’s extremely high infectivity we know it is only a matter of time before it gets to Palmerston North. I am pleased that you have clearly given this issue a lot of thought and have already discussed it with your GP and a local neurologist and that they concur with my thoughts. You are already past the recommended 3 week inter-vaccine interval and there is some attraction in your suggestion that you delay the 2nd dose a little – let’s say until 6 weeks. I do not think there is merit in taking a lower dose. I wish there was some data on which to base my recommendation but, as you point out, neither the Israeli study nor any of the other studies specifically address the issue that you raise. Good luck with making this very difficult decision.

Unfortunately, I have no simple answer. Residual pain after GBS is not rare, affecting about 40% of patients. It is unusual for it to be as severe as you describe but certainly can happen. The good news is that it usually improves over time and, until it does, there are a number of treatments that can take the edge of the pain. You need to be insistent with your GP that follow-up with neurology is needed.