MS Society UK | Forum

Covid Jab and a flare up

Hi all
My wife has RRMS and in March she had her Astrazeneca Vaccine and has been ill every since. I’m writing to ask if anybody has had a MS flare up after having this jab?
Thanking you for any help you might be able to give.
Rob

I’ve had both AZ doses and that has coincided with the worst 4m of MS since I was diagnosed 11 years ago. That might be a coincidence, who knows?

Someone else posted here recently saying something similar, and it took steroids to ease the rolling relapses that they had experienced for several months.

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Thank you for this I’ve told my wife about it
Rob

Hi , I’ve had both of my covid jabs (astra Zeneca) and on both occasions my existing MS symptoms got worse , my legs were heavier and weaker than normal, the numbness in my feet intensified , and the body stiffness was much worse. These symptoms lasted for about a week before slowing getting better. I hope you feel better soon.

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I’m not diagnosed with anything yet, still under investigation for so many neurological issues which have been on going for over 4 months. Spoke to a neurologist for the first time on Monday and he’s referring me for a full spine MRI to rule out inflammation on the spine but also asked when I had my 1st COVID jab. Funnily enough it was 4 days before my first symptoms but my own GP and a doctor at the A & E department weren’t interested when I mentioned it. Seems that it can cause neurological issues and damage to the nerves but they do repair. Hmmmm guess I’ll just have to wait on the results of the MRI.

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I hope ur feeling better soon my wife has now been told by the doctor at A&E to request a MIR but it’s alot easyer to say than get. But fingers crossed we can get some answers soon.

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Hi
My husband has PPMS been diagnosed five years ago, he too had the Astrazeneca vaccine three weeks ago and on the day he had it he walked upstairs to bed ok, about 4am he woke up wanting the loo, he couldn’t walk, I tried getting him to the bathroom, he couldn’t put one foot in front of another and was really groggy, I tried to get him back to bed but couldn’t and he lost control of his bladder, it was really scary. I had to call the ambulance and they took him to A & E, they sent him home the same day, but he still couldn’t walk and needed help. I still think his symptoms have got worse since this, even though his walking is a little better, he’s unsteady on his feet and needs more help than he did before.

That sounds really scary, I feel for you both, and hope things improve. This warm weather can’t be helping much.

I have just reported my relapses to MHRA. My instinct days the fact I’ve got so much worse in last 4 months is covid vaccine related.

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I had Astrazeneca. With me, fatigue levels really ramped up after each jab. They were just starting to reduce slightly from the first when I had the second. Fatigue levels shot right back up again. Now, 2 months later they are finally reducing a bit. My neuro had noticed similar with quite a few of his patients.

Oh wow I hope you are doing better now. Have you had any feed back after reporting your symptoms?

Hi Robjolly.

No improvements yet. Response from MHRA has just been the standard one. I’m not expecting anything else, just thought it was important to log

Cheers

Thank you all for your responses, it’s good to know there are others who have had the same. My husband had his bloods done last week because after his hospital visit a couple of days later we had to call the GP as he he couldn’t urinate, he wanted to go but couldn’t. The GP called and said they needed to check his blood as he was borderline diabetic in February, nobody mentioned anything about this when we rang for the results, just said everything was normal! They called yesterday and said he needs to have blood tests again in a month’s time as he had slightly raised platelets, we don’t have a clue what this means, I’m going to ring to speak to our own GP tomorrow. I just feel we’ve been left to it, no treatment for anything, he doesn’t get any physio either. I feel his MS has certainly got worse in the last 4 months or so. My husband never complains and I know there are a lot of people worse off, but it still doesn’t make it any easier as our lives has changed so much. I work full time but have gone down to 4 days now so I can be home with Colin more, as he can no longer work or drive because of the cognitive decline. I’m waiting for someone to contact me in relation to direct payments to get a little help with his care and to take him out some days. Sorry this is a bit long.

Hey
No need to say sorry about the length of your reply. I’m sorry to hear how bad ur husband is and I have my fingers crossed he starts to improve ASAP. We feel the same about just being left alone to deal with it all there doesn’t seem to be anyone that helps with anything to do with ms and I find this very frustrating. Fingers crossed you get the help you need soon.
Rob

When I reported my reaction to covid jab to the MHRA they very quickly came back to me with a number of very specific questions about my vaccine related MS relapse which were very relevant to my recent experience. This suggests to me that I’m not the first to report it and it’s an area that are actively looking into.

Hi All,
I have SPMS and my symtoms -once they have appeared - do not ease off.
I had my Astra Zenica jabs in March and May and after each jab I had deteriation in my symptoms.
I was fortunate to have started on Fampyra for a trial month in February- for improving the walking and had a very good response to it until I had to wait 6 weeks for a repeat prescription. In that time I had my first Covid jab and noticed deteriation in walking, and increased numbness in my feet and R leg. I blamed the delay in re-starting the Fampyra but I was told by my consultant that it was most likely to be the jab!!
I’ve now been sent an appointment for the booster on Sunday 5th December 2021 -I’m told it will probably be the Moderna vaccine but I feel very reluctant to have it as I really do not want to encourage any change in my already problematic symtoms!!
Does anyone have any advice and experience of any change in symptoms post -booster. Should I have the booster?? A.

Only you can decide! However think through your risk factors for Covid. Do you come into contact with people a lot or are you pretty much isolated? Are you good about wearing masks and keeping social distance and are others around you as careful? Do you have any of the comorbidities that put you at greater risk - diabetes, high blood pressure, overweight etc? Are you on any immunosupressants?

Then think through risks to others. Do you come into contact with people who are at high risk, so is it important that you are the best protected for their safety?

Then look to see what virologists are saying about boosters.

This is a recent one from Vincent Racaniello at 1hr 27 minutes to about 1hr 32 minutes. BTW he’s currently not about to have one - he thinks 2 lots of vaccine are still giving plenty of protection for many people.

And then in a discussion (at 32:00) between 3 virologists and a science journalist where 3 have had the booster, 1 (Vincent) hasn’t and they explain why they have or have not.

Interestingly on December 17th on TWIV they’ve got a specialist Paul Offit on to talk specifically about boosters. Paul Offit wrote an opinion piece in the Washington Post about boosters on 29th November, which is worth a read:

And look at what others are saying too.

I’m currently pondering the issue. I can’t get a booster locally - I’d have to do an 80 mile round trip. Really I want to hold out until Novavax comes onstream - which may be very soon. I notice the 3 virologists are interested in Novavax. I’m going to be watching carefully how Omicron behaves to see if I need to jump for a booster before Novavax becomes available.

Hi Ziola,
Thank you for your reply and it’s certainly given me food for thought and some comfort that I could have a fairly good immunity even without the booster but still have to consider the risks.
I had the flu vaccine yesterday and feel that my symptoms have intensified and so I’m going to postpone the covid booster for now.
1- to give it a break and
2- to give me some more time to decide on risking the booster. |I can’t purposfully risk tempting any further deterioration.
thanks A

I’m not sure I can reply to multiple people here, and I know this post is old, but for folk on this thread, if you’ve had a relapse or worse symptoms following a jab, please consider reporting it. You can use the YellowCard app or go through the website, and when people report their experiences it makes it safer for everyone else with MS who gets invited for the jabs, as they’re working with more accurate and complete data about (potential) side effects. In theory Dr’s should do it when they get a patient in with a possible side effect, but they don’t always, at least partly because of time pressures. Obviously it’s an individual choice whether you opt to do so or not, but anyone can and it can make a difference :slight_smile:

Hi All,
Whaaaa. I have-rightly or wrongly cancelled my booster jab on 5th December with an option of having it in the new year.
Now we have the Omicrom strain and the advice is that 2 jabs are not enough!!
i’m still very worried about having worsened symptoms from the booster but also very worried about the increased chance of catching the virus and that without the booster I’ll have to isolate myself.
it’s a now win situation!!

Hi All
Interesting to read the comments on COVID vaccinations and MS. I had my 2 AZ doses earlier in the year and my MS has been worse than ever. I have been self managing for many years whilst living overseas but am now on Plegridy.
I wasn’t sure about having my booster but after nagging by my family I finally agreed although I did make it clear to the nurse that it was under duress! Not getting on so well since I had it to be honest and slightly regretting it. Can anyone throw any reassurance that this is just a blip?!