The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further

[Jonan71]

My GP showed me the BNF today and it doesn't say this so won't give me anymore loading doses! He will only inject every two months. Don't know what to do as symptoms getting unbearable?

[gilly68]

I think it probably was an old copy which does not show new guidelines the latest one is red and looks completely different to old ones as it has a new format, next issue due March.

[Jonan71 in reply to gilly68]

So how can I actually see what it says?

[gilly68 in reply to Jonan71]

You could ask your local pharmacy if you could look at the newest bnf they have n tell them why you need to see a copy of new guidelines for hydroxycobalamin

[Jonan71 in reply to gilly68]

Ahh OK thank you will go tomorrow

[engels in reply to gilly68]

How old? The injection every other day advice was in the BNF 10 years ago to my knowledge and was still there 2 years ago or so when I last had access. Has it been removed since?

[gilly68 in reply to engels]

It's still there but new guidelines for patients with neurological symptoms has been added.

[engels in reply to gilly68]

What new guidelines? The only new guidelines that I know of are those from the BCSH and I don't think those have been incorporated into the BNF.

[helvella in reply to engels]

The February 2016 on-line BNF says:

Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months

evidence.nhs.uk/formulary/b...

[engels in reply to helvella]

But that's not new. It's said that for many years.

[engels in reply to engels]

Sorry, I think we are talking at cross purposes. I agree that the injection every other day advice is still in the current BNF so am not sure what Jonan71's doctor was reading.

[engels]

The BNF is available online. The layout has changed since I last saw it and to find the injection every other day advice you have to go into the specific hydroxocobalamin section here:

evidence.nhs.uk/formulary/b...

[gilly68]

Just checked if I could find guidelines on Google by asking for "BNF guidelines for b12 deficiency" all info is there in the first option 😃

[Jonan71]

I will go to the pharmacist tomorrow and see if they have the latest copy and try and read it, thank you for your advice

[humanbean in reply to Jonan71]

You don't need to see a pharmacist to look at the latest copy. As a couple of people have said above, the current BNF is available to see (for free) online.

The page to look at is this one :

evidence.nhs.uk/formulary/b...

and the quote you need from that page is this one :

By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months

I added the emphasis.

You could print out the page and show it to your GP.

[Lindax in reply to humanbean]

My gp said I haven't got PAID so won't give me extra injections. Even though I've all the symptoms that show PA and its left me permanently disabled. She said I don't have intrinsic factors so can't have it, even though I was anorexic for years which is a cause. So now I buy my own and self inject weekly. It costs me quite a lot from amazon. Dear. My doctor no longer gives me any at the surgery or helps me with the cost even though I'm on disability benefits.

[Jonan71 in reply to Lindax]

Do you get injections from Amazon ?

[Lindax in reply to Jonan71]

I get everything from amazon.de, based overseas in Germany. Its the German Amazon and they.can legally supply vials to the UK, where its illegal to buy online.

[Sleepybunny in reply to Lindax]

Hi,

"She said I don't have intrinsic factors"

Do you mean your IFA(Intrinsic factor Antibody) test was negative Lindax? Hope your GP knows that it is possible to have PA even if your IFA test is negative.

The "BCSH Cobalamin and Folate Guidelines" mention Antibody Negative PA. I found it helpful to read the BCSH Cobalamin and Folate guidelines and gave acopy to my GP. Found page 29, a diagnosis flowchart helpful. I also gave my GPs a copy of this book which is upt to date with new guidelines.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

[Jonan71]

I really don't know what I was shown then I will print a copy and show a new doctor if I don't get in trouble for keep making appointments. I have printed the NICE guidelines and BSCH ones.