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Pernicious Anaemia Society
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Given prescription for 1000mcg cyanocobalamin tablets

Hi. I read the forum here daily and when I read this info below wondered how my GP managed to provide me with 1000mcg cyanocobalamin tablets daily if they aren't licensed for use in the UK? I believe it was contained in a reply post by Foggyme a few hours ago?

I think I've just started the second pack, so probably been on them just over a month now. Was hoping for some noticeable improvement but I feel no better since taking them though I'm only asking about my actual prescription if anyone can assist Many thanks.

{{{{{ 3. High dose tablets or sublinguals were used in these trials but these are not licensed for use in the UK so any prescription from a GP will only contain 50mcg cyanocobalamin ......}}}}

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Hi jib70 if you click on the link below, type "cyanocobamalin" into the search box, scroll down to where it says "Solution for injection - Tablet", click on tablet and scroll down all the available types and you will see some are 1mg toward the bottom and maybe you can identify the ones you are on.

bnf.nice.org.uk/

The BNF (British National Formulary) is the doctor's Bible.

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Hi Clivealive. Yes, these are listed as available products but they are not yet licensed for prescription in the UK. Nor are they listed in the prescribing instructions section.

So, I'm confused, or have completely lost the plot. Best guess is that they plan to get these licensed for future use, but have not done so yet.

No idea how GP has managed to prescribe them (see reply to jib70 for further information).

So hmmm....🤔😉😀

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As you know I'm still on cyano 1mg injections on prescription as it appears that my doctor "overruled" the guidelines despite their being shown as "not prescribable in NHS primary care" so I'm just keeping my head down and my arm bared every three weeks.

The pharmacist has my injections "flagged" to be OK to dispense.

I'm "confused.com" too :)

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A rare 'overrule' in the right direction Clive...what a good GP. Good plan - head down, arm out...onwards and upwards 🙄😀😀.

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Hi jib70.

In the UK, prescription medicines (POM's) are licensed by the MHRA before GPs are able to prescribe them.

I've just checked the MHRA database and the only cyanocobalamin tablets licensed for prescription in the UK are 50mcg tablets. Here's the link...

mhra.gov.uk/spc-pil/?subsNa...

On checking the British National Formulary, this now lists 100mcg and 1mg tablets in the medicines available section:

Lamberts Vitamin B12 100microgram tablets (Lamberts Healthcare Ltd)

Active ingredientsSizeUnitNHS indicative priceDrug tariffDrug tariff price

Cyanocobalamin 100 microgram

100tablet£3.88——

Behepan 1mg tablets (Imported (Sweden))

Active ingredientsSizeUnitNHS indicative priceDrug tariffDrug tariff price

Cyanocobalamin 1 mg

100tablet (POM)———

Cyanovit-B12 1000microgram tablets (Synergy Pharmaceuticals)

Active ingredientsSizeUnitNHS indicative priceDrug tariffDrug tariff price

Cyanocobalamin 1 mg

28tablet£6.68——

Lamberts Vitamin B12 1000microgram tablets (Lamberts Healthcare Ltd)

Active ingredientsSizeUnitNHS indicative priceDrug tariffDrug tariff price

Cyanocobalamin 1 mg

60tablet£4.44——

Link: bnf.nice.org.uk/medicinal-f...

However, the 100mcg and 1000mcg tablets listed under 'all available products' are not included in the section of the BNF which details prescribing instructions:

bnf.nice.org.uk/drug/cyanoc...

So...hmm...as far as I can determine, the 1000mcg Cyanocobalamin tablets are not licensed for prescription in the UK, as yet.

There is something called 'off-licence' prescribing. But this usually refers to when a medicine is licensed for one use, found to work for something else, and so then prescribed 'off-licence' for a different medical condition (acceptable if a doctor accepts responsibility for off-label prescribing -because the drug has already been licensed in the UK).

But again, not sure how this would apply to high-dose Cyanocobalamin because it does not yet have a licence in the UK.

Best guess is that they do plan to offer these in the future, but that they have yet to be licensed for use in the UK.

So...not sure what's going on here. fbirder, any ideas? Anyone?

Next time you see your GP perhaps you could ask them if the high dose tablets are licensed with the MHRA for prescription in the UK. And if not (which is currently the case) how are they able to prescribe them? Be very interested to hear the answer.

👍

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The licensing arrangements in the UK are driven by manufacturer applications rather than safety considerations.

GPs are supposed to use their own judgement which means that they can prescribe things that aren't on the licensed list if they feel this is appropriate.

Whilst high dose oral may be effective in keeping B12 levels high in some patients they are unlikely to be that effective in raising B12 levels in patients with absorption problems - if they are going to be used it should be as a follow on to loading shots. ... that may not be reflected in the notes available to GPs though.

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Thanks Gambit. I also suspect that there's no guidance about switching people back to injections if the oral supplements don't work (which they may not, for many).

So...since cyanocobalamin tablets are cheaper than any form of B12 injection and relieves the cost implications of attending the surgery for jabs, I suspect that this is a cost saving measure unilaterally implemented by some GPs.

And the cynic in me rather suspects that most GPs will not exercise this prescribing 'option' in other cases where higher cost medications may be warranted (for the benefit of the patient 🙄)

A sad and confusing state of affairs...with we deficients placed firmly at the sharp end. Sigh.

👍

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Thank you Foggyme. Sorry if I've asked a difficult question here, I was just curious.

I've been prescribed the Synergy 1000mcg which I see from your post above is listed on the BNF.

Been told to take them for 3 months and see if there is any improvement - but have to say that 3 months is a long time to wait for an improvement !

I shall ask the questions you suggest next time I see GP and report back as GP's answers might be useful to others.

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Hi jib70...oh it always pays to be curious...especially where treatment for B12 deficiency is concerned 😉.

And yes, Synergy (Cyanovit) is listed as being available...but it's not licensed for use in the UK and does not appear in prescribing instructions. So, appears your GP has made a unilateral decision to use this...not treatment receommended in any of the current UK guidelines.

Also worth noting that if you have neurogical symtpoms, B12 injections should be commenced immediately (not oral supplements - even for a trial period).

Just in case you have neurolgical symptoms, here's some information about that:

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

If you don't have neurogical symtpoms now but go on to develop them while you're on the tablets, show,your GP this and ask to be changed to B12 injections:

archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

And in case you haven't seen them, here's the UK treatment guidelines that all GPs should be following:

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.

Good luck. Hope you begin to perk up soon.

👍

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Thanks for the info and links Foggyme, I keep reading and learning.

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If you have a deficiency or issues related to maintaining a healthy level of b12 , you might think twice about taking pills period.

Below is link to world’s leading b12 clinic :

b12-institute.nl/caution-no...

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Thank you boru, I agree not satisfactory at all.

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\\o// I'm just prescribed Cytamen*Injection(1000mg/ml) every three months ! Got the solution, but concerned if there any after effects... Shall report in due course - T/Q

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