Evidence needed please

[Me2801]

Can anyone please direct me to any file/documents/evidence that can back up that my daughter still needs to continue with alternate day injections for neurological problems.I asked a few weeks ago about how to tell when there is no further improvement to neurological symptoms - I realise that she is still slowly improving even though it is now slower. Her GP is convinced that injections since November should be enough as she's never had anyone on them so long...I actually think that's because she's never actually prescribe to BNF guidelines before!

My daughter has an appointment on Friday and feel I need something official to show the GP rather than saying that I've read that for some people it can take a long time.

Many thanks

[clivealive Forum Support]

Hi Me2801

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

The doctor should have a copy of the BNF Guidelines on his desk'

Hope this helps

[Me2801 in reply to clivealive]

Thanks - the problem we're having is my daughter's GP thinks 3 months alternate day injections is too long so was looking for some evidence to say can take a lot longer...everything I read says it can but she's not listening!

[Foggyme Administrator in reply to Me2801]

Hi Me2801.

Try this:

stichtingb12tekort.nl/weten...

Speaks to the possible necessity of alternate day injections for up to two years in the presence of neurological symptoms.

Also more in it that may help you with your GP. Perhaps you could highlight everything that is relevant to your daughter's case and take it along to your GP.

Though you may have to be quite insistent and make sure he looks at the highlighted bits while you're actually there with him 😄.

Good luck 👍

[Me2801 in reply to Foggyme]

Thanks that's brilliant...just what I needed!

[clivealive Forum Support in reply to Me2801]

The guideline doesn't say "3 months alternate day injections" but it allows doctors to "deal with things sensibly and realistically in a way that is based on practical rather than theoretical considerations" (the pragmatic approach) by continuing "alternate day therapy after three weeks of treatment"

Only your daughter can "tell when there is no further improvement to neurological symptoms" she should make a list of them, present it to her doctor who should treat her accordingly.

Do you know what your daughter's folate level is as this is essential to process the B12 she is having injected? Maybe her doctor doesn't know about that either.

I'm not a qualified person but there are others on here who will be able to give you good advice.

I wish you both well