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Laundretta profile image
9 Replies

When loading, why do we only inject every other day? Why not every day?

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Laundretta profile image
Laundretta
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9 Replies
Nackapan profile image
Nackapan

It differs in different countries. Some give weekly

U.k settled on your over 2 weeks .

I personally felt overwhelmed on every other day and as got so much worse so may have benefitted ftom less often for longer??

Going back to the inititial research may give reasons for the regimes

Orchard33 profile image
Orchard33 in reply to Nackapan

Do you know of the initial research? I'd like to know more about it. I've got the impression that the B12D/PA treatment regime has very unclear origins.

Nackapan profile image
Nackapan in reply to Orchard33

Yes I've read on here that said .

You'd have to read right back to the beginning .

Clever scientists made B12 in a form for Injections.

Saving lives and releiving them of a diet of raw liver .

As for the actual regime.

It was used on sick children in London.

Adults in different situations.

All that will be documented.

I know the name had now been changed in NICE guidelines but reading up on Pernicious Anaemia when discovered a start .

It's finding where the research came from used in NICE guidelines in the first place isn't it.

I agree .

The neurologist I saw read everything there was to read as far as published papers as b12 deficient himself.

He not only wasn't convinced by the use of high oral b12,

but also assured me to keep going on b12 injections every other day then eventually helping to keep a prescription of 2 weekly long term.

I trusted him.

I'm interested why long term b12 treatment medics can and will prescribe 2 weekly but no more.

What have they read ??

There are members with a scientific background on here that are more able to decipher the medical paper origins .

May be able to answer your question better.

Orchard33 profile image
Orchard33 in reply to Nackapan

Thanks for your reply, Nackapan. Very interesting. The origins of the B12 protocol used by the NHS are lost somewhere in the space between scientific research, which has a lot to say about how serious B12D is, and medicine that is entrenched in its own historic way of doing things, the basis of which is obscure and neither defensible nor rational and seems to bear little relationship to the science. How has that happened? There is something deeply dysfunctional going on.

tomdickharry profile image
tomdickharry

When I was first diagnosed, about 40 years ago, GP letter states 'hydroxocobalamin, 1mg daily'.

Wwwdot profile image
Wwwdot in reply to tomdickharry

I would get that framed! For several reasons … a GP bothering to write a letter🤪 … a sensible B12 dose …. recognition that your B12 system is broken … recognition that to function and survive your body needs B12 daily.

My body certainly does. I tried to reduce my B12 a few days back and I regretted it. I was shocked how quickly the disorientation took hold and the achy teeth. So back to four a day for the time being.

That GP who wrote that letter was a good ‘un!

🤗🤗🤗

B12life profile image
B12life in reply to Wwwdot

I absolutely second this!! Frame it!

Hockey_player profile image
Hockey_player

There are some people on this forum who feel better injecting every day or several times per day. I think that the EOD guideline probably came from studies that indicate that a lot of the B12 is excreted in the urine after a couple of days. The same study showed high variability between people with PA regarding how long it stays in their system. Every other day is a good starting point if you have neurological symptoms. When those are gone, monitor how you are feeling to determine a good maintenance dose. Cyanocobalamin probably needs to be injected more often than Hydroxocobalamin so it also depends on what you are injecting.

B12life profile image
B12life

well. Good question. Not sure what the science is behind that, but I have to inject twice a day.

The medical journals state that with Hydroxocobalamin is a natural form and highly bioavailable , thus recommended dose is EOD vs cyanocobalomine is synthetic and supposedly not as bioavailable thus requires more frequent injections, as in daily.

However I have done well with cyano and do injections twice a day.

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