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B12 injections - how to persuade GP to up frequency?

12 replies

Scarby9 · 23/05/2021 07:27

My mum has Pernicious Anaemia and has B12 injections at the GP every 12 weeks.
Through the last year she was swapped to daily tablets due to Covid but has now had two injections back in the old pattern.
She basically crashes from around 9 weeks - extreme tiredness and physical weakness, weeping etc. She has other health issues (dementia, RA, thyroid) but it is the B12 collapse that has most impact. The latest one has nearly broken my father who is her carer. He also has RA and struggles to help her physically when she gets so weak. They are both mid 80s.

In the last fortnight she would get up, have breakfast and feed the birds then back to bed for 2 hours, up for lunch then back to bed... No life at all.

On Wednesday she had her injection and by Friday was as good as she gets.

My dad has failed to persuade their GPs to give her more frequent injections and has (very uncharacteristically) asked me to step in to try.

Has anyone succeeded? What worked for you? Any tips? Their GPs say no to F2F appointments and that 'you can't have' more frequent injections.

OP posts:
Coldhandscoldheart · 23/05/2021 07:29

How did the daily tablets work for her?
Could you ‘top her up’ with tablets from say week 8 to cover those three weeks?

Scarby9 · 23/05/2021 07:37

To be honest, we think the tablets were better on balance. She was never as good as she is in the couple of weeks after the injection - she operated more like week 5 level throughout so we were keen to get back to the injections, but there weren't these massive dips.
Can you mix and match? Eg. Injection plus tablets? I have also seen oral sprays recommended.
My dad is very law abiding and reluctant to do anything the doctors haven't said to do, but they are both really being let down by this.

OP posts:
Firstbornunicorn · 23/05/2021 07:44

Well b12 is water soluble, OP, so it would likely be ok for her to take tablets as well as her injections. She won’t overdose.

You’ll want to get 1000mcg to make sure some is absorbed.

Scarby9 · 23/05/2021 07:49

Thank you @Firstbornunicorn
I obviously don't want to do anything that might interfere with any other medication. Both parents have had crises caused by clashing medication (prescribed) and I have zero medical knowledge so don't want to cause problems.

OP posts:
Coldhandscoldheart · 23/05/2021 07:56

Try speaking to her pharmacist for a medication review?

Scarby9 · 23/05/2021 08:03

@Coldhandscoldheart
Does the pharmacist have power to do something like shorten the interval? Their pharmacist is great. Always chasing the GP for things they haven't done.
Thank you. I will suggest that.

OP posts:
Oblomov21 · 23/05/2021 08:04

I would push hard on this Op. and get your Gp to agree to more often. And to get Gp to also advise mum that she can top up with tablets.

The chances of her 'overdosing' or doing any damage is almost nil, right?

MildredPuppy · 23/05/2021 08:05

There is a pernicious anaemia society who had advice. I am not medically qualified in anyway but i dont think b12 is toxic in high doses in the way b6 is.

I think NICE recommend every 2 months if there is neurological symptoms so look up those and see if that is relevant

Scarby9 · 23/05/2021 08:07

Thank you everyone.

OP posts:
StillDumDeDumming · 23/05/2021 08:10

The pernicious anaemia society is great. My dp did his own injections via the surgery in lockdown and has continued.

The PA society advocated on behalf of my friend's husband with his surgery to increase the dosage. It's maddening - it costs around £3 per injection and in other countries you can buy it over the counter in injection form. UK is really behind with this.

Moreguac · 24/05/2021 18:43

Oral B12 doses in someone with PA need to be a lot higher than in someone without PA due to the reduced functioning of Intrinsic Factor.
So it can still work but worth making sure dose is high enough.
The other alternative is to use sublingual B12 so there’s no reliance on absorption in the terminal ileum.

ihearttc · 26/05/2021 22:43

I have PA and I have my injections every 10 weeks. I crash from about week 7-8 so I physically couldn’t manage 12 weeks. It took a huge amount of battling with the GP who finally agreed. I also have RA and the PA makes me feel worse. I top up with high dose B12 sublingual tablets, they melt under your tongue. They are a Solgar brand. I got them from Amazon but Holland and Barratt do them.
It’s an awful disease and I don’t think anyone gets how utterly debilitating it can be. I say I’m exhausted but it’s so much more than that.

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