Loading Dose Advice: Hi can you tell me... - Pernicious Anaemi...

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Loading Dose Advice

dabs17 profile image
8 Replies

Hi can you tell me if loading doses can be given over 3 weeks rather than 2 weeks?

Thank you

Debbie

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dabs17 profile image
dabs17
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8 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I guess some UK GPs choose to deviate from standard treatment pattern. If patient has neuro symptoms then there is no set time limit in UK guidelines on how long loading jabs can continue.

Treatment patterns can vary from country to country.

In UK standard treatment for B12 deficiency without neuro symptoms is....

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

In UK standard treatment for B12 deficiency WITH neuro symptoms is....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Has GP offered them over three weeks or do you have a particular reason for wanting them over three weeks?

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

These guidelines do mention the possibility of a review after three weeks of loading jabs for those with neuro symptoms. I assume that for patients who have a 3 week review those whose symptoms are still improving would continue on loading doses.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

I am not medically trained.

dabs17 profile image
dabs17 in reply toSleepybunny

Thank you for your reply.

Everywhere I have read loading dose over 2 weeks but my GP receptionist only booked me in for 1 week so when I had my second injection yesterday it came to light that I hadnt booked for next week. No bookings left so they have booked my the following week which would be week 3. Was wondering if anyone else went into 3rd week for loading dose

Deb

Foggyme profile image
FoggymeAdministrator in reply todabs17

We do hear that some have the loading doses slightly over the two week period. This is usually because of constraints on surgery appointments, rather than because of the requirement for different dosing regime (as it appears, in your case).

The aim of the loading doses is to replenish levels of B12 in a short time-frame, so having them over a three week period instead of two, whilst not ideal...it should still raise your B12 levels quickly. So notmsomething you should worry about.

The crucial thing here...and what some GP's don't realise...if you have neurological symptoms, then after the loading doses, injections should continue every other day until no further improvements (for some, this can take many months).

If you do not have neurological symptoms, the treatment regime following loading doses is every 2-3 months (some GP's are not aware that the treatment guidelines have been changed so that injections can now be prescribed every eight weeks (rather than every twelve weeks).

Also - the 'one-size-fits-all' maintenance regime is not sufficient for everyone with B12 deficiency. The key thing is...if your symptoms return before your next injection, are relieved by that next jab, then return again before the next one is due...you need more frequent injections. Injection frequency to repair and keep well does vary for each individual, so it's a matter of working out what frequency of B12 injections your body needs to keep symptom free.

Any GP who is well-informed about B12 deficiency will not have an issue prescribing the frequency of injection needed (rather than the currently recommended regime). However, many have problems if they need either the neurological regime (which many GP's have not heard of) or more frequent maintenance injections.

Post again if you discover you need more frequent injections than your GP is prepared to prescribed and folks here will be able to advise how to approach your GP.

U.K. prescribing guidelines here at this link - read further down to see the dosing regime for those with neurological symptoms (your GP should have a copy on their desk but if not an up-to-date copy, it will not contain the new eight week regime (listed in this link):

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

👍

Sleepybunny profile image
Sleepybunny

Hi again,

Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, tremors, restless legs syndrome, memory problems, balance issues, word finding difficulties, migraine etc?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

deniseinmilden profile image
deniseinmilden

You should be fine.

In Holland they have done extensive research into B12 and their protocol is for the loading doses to be given as 1 per week. This is considered plenty to raise your levels of B12 and is less of a shock to the system. It gives your body chance to "restock" the other nutrients that are used alongside the B12 so you are less likely to get other deficiencies happening and is less likely to trigger an autoimmune response against the B12. Animal diet changes are always recommended to be done gradually for these reasons too.

In hindsight I would have chosen this option and have a hunch that I might not now have to do daily jabs if the introduction of the B12 supplementation had been done more slowly. Who knows?

It certainly isn't a bad thing and may even be better for you.

As the others have said, the most important thing is that you get enough treatment to stop your symptoms (symptoms are your body's way of telling you something is wrong).

Be aware that other things are used alongside the B12 and you might benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, maybe vitamin D, ideally from your diet.

I hope you feel better soon.

Coachlady11 profile image
Coachlady11

My doctor gave me my loading doses over 5 weeks - 1 a week

I didn’t know of this community then so went along with it

3 monthly injections were no where near enough for me and asked for more frequent jabs a number of times. I was turned down each time and even told that they were thinking of stopping them as they didn’t think they did that much good!

Gave up arguing in the end and now self inject once or twice a week depending on when I feel symptoms coming back.

Mine were. I had the first one, felt wonderful almost immediately and went off in the afternoon 250 miles away looking after my sons dog. We had a great time in and around Edinburgh in some excellent weather. When I came back it had the rest of them over the next week and a half.

Best wishes for your new life.

dabs17 profile image
dabs17

Hi everyone and thank you for your replies, much appreciated.

I must say I feel a bit of a fraud on here as my symptoms are no where near as bad as anybody else's. I only knew I was low on B12 due to routine bloods.

I do feel tired and quite more forgetful than normal and few other things that match other peoples symptoms but I put it all down to my age and also being pre- menopausal.

3rd dose today so watch this space.

Thanks again

Debbie

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