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Original poster

I've had Guillain-Barre syndrome and I'm due my 2nd Oxford vaccine: WWYD?

23 replies

Toomanyminifigs · 07/05/2021 16:14

Hello,

I know this is ultimately my decision but I would really welcome some advice/opinions.

I'm mid 40s and about 15 years ago I had Guillain-Barre syndrome. It's a very rare neurological condition in which the body's immune system attacks the nervous system. No one knows what causes it but it's believed to be a post-viral thing. I was hospitalised and it took me months to learn to walk again. It's very serious - you can end up paralysed/ in a coma - and at the time my consultant said that if you've had it you are more predisposed to getting it again.

I've had my first Oxford vaccine and I felt feverish for around 12 hours and had a headache for a couple of days but nothing major. That was 9 weeks ago.

I've now had my invitation to book my second jab and time is running out (to meet the 12 week deadline). And now I've seen this (possible link to the Oxford vaccine and GBS):

www.reuters.com/business/healthcare-pharmaceuticals/eu-regulator-reviews-reports-rare-nervous-disorder-after-astrazeneca-vaccine-2021-05-07/

I've called 119 for some advice but they say it's not been officially flagged on their system yet so couldn't offer me any advice. Should I assume that as I was OK after my first jab the risk has passed?

I had COVID last year and had long COVID so I'm aware of how serious a disease it is but I just don't know what to do.

Would you have the second one?

Thanks for reading.

OP posts:

herecomesthsun · 07/05/2021 16:57

I would get in touch with my GP . You can email a query to them or ask for a callback. It's the sort of question for which you don't really need an in person appointment, if you just want their opinion.

CarrieBlue · 07/05/2021 17:52

Yes Id have it.

KriKay · 07/05/2021 17:59

Hi I’ve also had guillan barre syndrome, around 40 years ago now. I’m 46. I had also heard of links between vaccination and guillan barre. They think I got it after a virus.

I spoke to GP, who spoke to public health. I was told that there is a much greater risk of getting GBS after virus than vaccine and that risk no greater from covid vaccine than any other vaccine.
I had covid in November and I got Pfizer vaccine just last week.

I think there’s risks in everything! I was so undecided what to do, but although it’s a possibility, I don’t think it’s any more likely than any of the other risks that come with covid or vaccine.
Speak to your GP and hopefully that will help you decide, but I think if you’ve already had first vaccine there wouldn’t be any extra risk from 2nd one??

DentonsFringeArnottsWaistcoat · 07/05/2021 18:03

Yes I’d have it. Because
A. As you said, you’ve had the first and been ok
B. GBS is thought to be post viral and there may also be a link to getting it post COVID - some studies late last year said there may be, others said not the truth is probably that there just hasn’t been enough data to analyse - so I’d want to minimise my chances of catching COVID
C. In any case, though you may be more likely to get GBS if you’ve already had it, recurrent GBS is, under any circumstances, very rare
Best wishes and hope you come to a decision soon

Original poster

Toomanyminifigs · 07/05/2021 18:36

Thank you all so much for taking the time to read and reply. I really appreciate it.

@KriKay: I've never met anyone else who's had GBS! I hope you've made a full recovery. It can be very scary.
@DentonsFringeArnottsWaistcoat. Thanks for your wise words. You all make very valid points about the risk of actually getting COVID and that triggering GBS anyway. I hadn't really thought of that.

I'll try and call my GP next week anyway just to flag it.

Thank you again. As you all say, there are risks with everything and it's about balancing that risk. I'm also terrible at coming to decisions about anything!

OP posts:

HavelockVetinari · 07/05/2021 18:38

I think on balance I'd get the 2nd jab, since the 1st was OK.

As an aside - it's such a rare thing, I've never heard of anyone getting it (outside House) - I'm so sorry that happened to you. Are you fully recovered?

HavelockVetinari · 07/05/2021 18:39

Apologies - just realised my question is just morbidly curiosity

AWryGiraffe · 07/05/2021 18:43

A parent had GBS, and has had both their jabs, no effects whatsoever.

Original poster

Toomanyminifigs · 07/05/2021 18:49

@HavelockVetinari: I am really laughing at your post and I'll tell you why. When I first started developing the symptoms of GBS I had no idea what it was. It was absolutely terrifying as I started to lose the use of my legs. I called my boss (as I couldn't get into work) and described my symptoms and she said: 'Oh my God - it sounds like Guillain Barre.' And she knew that because she'd seen it on 'House'!!

I was a bit of a celebrity in the hospital as it's so rare. My consultant asked if I was OK with loads of medical students coming to see me as they may not come across a case again.

Every case is different in that they can't predict how seriously it's going to hit you (bit like COVID I guess). I was pretty lucky. I 'just' lost the use of my legs for a few months and then I got full movement back with physio. No one can tell me why or how I got it as I wasn't ill beforehand.

OP posts:

OwlTwitterings · 07/05/2021 18:55

I would have it although I would have sought an alternative if it was the first dose.

Chocolategirl19791 · 07/05/2021 18:59

This is interesting. I had GBS as a child and am due first dose on Monday. I'm early 40s and already have concerns about AZ and the clots and this does make me wonder a bit more. Every time I've had vaccines the doctors always give it extra through l, when I was pregnant even the flu having various people being consulted on risk vs benefit.

Serenschintte · 07/05/2021 18:59

Have your anti body levels tested and if high enough don’t be vaccinated and keep and eye on them to see if they drop

Chocolategirl19791 · 07/05/2021 19:00

@OwlTwitterings I'd like to do that but given it's not on the list with anyone as an issue yet I'm not sure they'd consider it. I always wondered if something like this previously as its auto immune makes you higher risk for the clots.

Sadsiblingatsea · 07/05/2021 19:01

No way.

knackeredmumoftwo · 07/05/2021 19:04

My Dad had leukaemia, a stem cell transplant, GBS - had to learn to walk again - horrible illness and shielded for a year - he's had two doses of AZ vaccine and has been fine - tbh I didn't think of the vaccine triggering GBS but just to reassure you he was ok - good luck x

KriKay · 07/05/2021 19:28

@Toomanyminifigs I am fully recovered, but I was really ill, on ventilator, cardiac arrest, couldn’t walk etc. I was only 6, so I hardly remember any of it! Which I think was a blessing as I don’t think I could’ve coped if I’d been older and more aware!

Glad you’ve fully recovered too. Good luck with deciding about vaccine! Speaking with GP will hopefully help too!

BogRollBOGOF · 07/05/2021 19:36

@HavelockVetinari

I think on balance I'd get the 2nd jab, since the 1st was OK.

As an aside - it's such a rare thing, I've never heard of anyone getting it (outside House) - I'm so sorry that happened to you. Are you fully recovered?

My (very laymans) understanding is that AZ tends to provoke more immune reaction on the first round, therefore it is probably favourable to complete the second dose.

It's difficult with the lack of clear guidence due to the lower numbers of people already on the second dose, combined with rare conditions. Much easier for an internet random to take a punt than a professional with a lack of facts!

I actually clicked on this thread because an aquaintence is seriously ill with this condition at present. It's reasurring to hear of good recoveries, I understand it can be slow.

TruelyWonder · 07/05/2021 19:37

Definitely a conversation with your GP is in order. If they give the ok I would just have the second dose. Sounds like covid could get you bad and one dose will not necessarily be enough to stop infection. Two would have a greater chance and longevity.

Also side effects like are supposed to be worse with the first dose of AZ. So hopefully like my husband the second will be free of any.

HavelockVetinari · 07/05/2021 20:18

[quote Toomanyminifigs]@HavelockVetinari: I am really laughing at your post and I'll tell you why. When I first started developing the symptoms of GBS I had no idea what it was. It was absolutely terrifying as I started to lose the use of my legs. I called my boss (as I couldn't get into work) and described my symptoms and she said: 'Oh my God - it sounds like Guillain Barre.' And she knew that because she'd seen it on 'House'!!

I was a bit of a celebrity in the hospital as it's so rare. My consultant asked if I was OK with loads of medical students coming to see me as they may not come across a case again.

Original poster

Toomanyminifigs · 07/05/2021 20:59

Thanks so much to you all for replying. I am actually amazed that there about 4 people here who have also had GBS or know someone who's had it. Maybe it's not as rare as I was lead to believe.

@Serenschintte: I also wondered about trying to find out about antibodies. Do you (or does anyone) know how I can do this? Would/could a GP do this?

@Chocolategirl19791: that's interesting that GBS has been raised at your vaccinations. (And I'm sorry to hear that you've had GBS too.) I didn't actually know until now that there was a possible link with vaccinations and GBS. You're absolutely right about the risk v benefit thing. I take it you're going ahead with your's on Monday?

@BogRollBOGOF: I'm sorry to hear that you know someone with GBS. It can be absolutely terrifying but my understanding is that nearly everyone makes a full recovery within a year or so. I am hoping that the risks posed are less with the second vaccine but as you say, it's hard to know with limited data. And I only have a maximum of three weeks to make my decision!

Thank you all again for taking the time to offer me reassurance and kindness.

OP posts:

Kyph · 07/05/2021 22:09

A good friend had a very severe case of GBS a few years ago, left with permanent damage. GBS has been linked to flu vaccine, in her case she had a virus at the time of the flu jab and they don't know for sure whatvthe trigger was. She's never had a flu jab since.
However she had both doses of covid vaccine because the risk of GBS in covid is much higher than the risk of a vaccine.

Kyph · 07/05/2021 22:12

Re antibodies. You can test for vaccine antibodies. Zoomdoc do one for about £60.
However you need to be aware that the second dose us important for long term immunity.

rwalker · 07/05/2021 22:21

I've had GBS hospital for months and a spell in a wheelchair and left with some percent nerve damage .
GBS can be triggered by any virus it's when you body make antibodies that start destroying your nervous system (sensory and motor nerves).

It's rare so 119 and gp not much knowledge on it .I'm in the GBS society they will send you info on it from proper experts not random off the internet .
I've had both jabs AZ

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