Has anyone experienced adverse side e... - Pernicious Anaemi...

Pernicious Anaemia Society

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Has anyone experienced adverse side effects after getting their B12 injection?

laulauedward profile image
15 Replies

I have been on the shots since Dec 2015 and the last two injections have caused adverse effects: flushing in the face, dizziness, accelerated heartrate - severe headache and awful pains in my lower back. The pain in back lasts around an hour but the headache lingers. Why am I experiencing this all of a sudden?

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laulauedward
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15 Replies
Nackapan profile image
Nackapan

Is it the same brand and sort of b12?

laulauedward profile image
laulauedward in reply to Nackapan

I’m assuming so. But will check with the nurse.

Nackapan profile image
Nackapan in reply to laulauedward

Yes I ask every time now what brand they are injecting. When j had an unusual reaction j asked what had bedn given.

To my surprise only the batch and expiry was recorded.

J spoke tk the pharmacist but they couldn't identify the brand

Then some weeks later I hac thd ssne 'reaction ' to what I had on prescription and Injected at home.

It used slightly different additives which mh body didnt like.

Ths other 4 brands used are fine.

Once I thought perhaps just me having a rough time but twice too much of a coincidence.

They are generic so just a thought.

laulauedward profile image
laulauedward in reply to Nackapan

Thanks got the reply x

Sleepybunny profile image
Sleepybunny

Hi,

Some forum members report that their symptoms get worse for a while after starting B12 treatment but you say you've been on B12 injections for several years.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

See side effects section in link above.

Some people experience a drop in potassium levels when they start B12 treatment.

Has GP considered whether you might be allergic to one of the ingredients although I think this is rare?

I am not medically trained.

Other links that may be of interest

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

laulauedward profile image
laulauedward in reply to Sleepybunny

Thanks for the reply and info.

deniseinmilden profile image
deniseinmilden

It sounds to me like an allergic reaction.

It is very unusual to react to B12, especially if you've been OK so far, but there's a possibility that there is something wrong with the ampoules.

It definitely needs looking into before you are treated again. You will need to go to your Dr's for more information and advice.

They should have recorded the batch number on your records which should give the brand at least. From this you will be able to see if the last 2 doses were

a) from the same batch as each other

b) different from previous ones

Ideally you should report your problems under the Yellow Card scheme in case others have had/may have the same problem

yellowcard.mhra.gov.uk/the-...

If there is nothing obvious showing up from the ampoules then it would be good to have blood tests run before your next jab, and after too, if you react again, to check your vitamin and mineral profile and see if there is anything else causing your reactions.

Forgive me rambling a bit - I'm thinking "on my feet" and just writing as I go, but...

I don't know - I'm only guessing - but I wonder if there could be some sort of infection which spikes when your B12 levels increase and the reaction comes from that?

PA is an autoimmune condition so if you have that it shows your immune response system is not working properly. Has your immune system suddenly decided to launch an attack on the B12 as a "foreign" substance in your body? There are some thoughts that the reason why some of us need very high frequency doses of B12 is that our immune systems see the molecules as the "enemy" and try to eliminate them ASAP, hence why we continuously need to top up, so it's not unheard of for the immune system to turn against the vitamin. Gambit62 might be able to give more ideas on this.

I know someone who has a similar problem with folate, even from food. B12 and B9 (folate) are methylators and that could also be the problem - especially if you have a stonking unshiftable headache with it as it is one of the symptoms of over methylation. The reason why hydroxocobalamin is used in the UK is that it is the best tolerated but it might be that you will do better on cyanocobalamin. Clivealive might be able to shed some light on that for you because he has cyanocobalamin jabs. You are unlikely to try methycobalamin but I really wouldn't unless you were certain it was OK.

I hope you can find a solution to the problem. I'd be really grateful if you could let us know what you find.

Good luck!

deniseinmilden profile image
deniseinmilden in reply to deniseinmilden

Gambit62

deniseinmilden profile image
deniseinmilden in reply to deniseinmilden

clivealive

laulauedward profile image
laulauedward in reply to deniseinmilden

Thanks so much for your reply- lots to digest and consider.

deniseinmilden profile image
deniseinmilden in reply to laulauedward

Thank you!Good luck!

Seth12345 profile image
Seth12345

How frequently have you been injecting over the years?

laulauedward profile image
laulauedward in reply to Seth12345

I have a shot every three months at the local clinic. I paid for the loading shots and some after that and then they became free hence why I’m not sure what is being given to me.

Syuri profile image
Syuri

Hi, I have an allergy to hydroxycobalamin which developed after approx 3 years of injections. Allergy was confirmed by hospital consultant injecting miniscule amounts of this, saline and cyanocobalamin but she was unable to confirm from my GP if it was the same hydroxycobalamin brand (they hadn't kept a record) . I now have cyanocobalamin and just yesterday, after weeks of trying, my GP has finally agreed to let me have this monthly instead of every 10 weeks due to pins and needles in my hands and wrist. I used the BNF guidelines (link given on this forum) to convince her. Good luck.

laulauedward profile image
laulauedward in reply to Syuri

Thanks for the reply x

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