B12 frequency

am i read this correctly-cut and pasted from NICE website

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

B12 every TWO months where neurological involvement EVEN WHEN IMPROVED

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  • Ha! try telling my gp that.....

  • Seems most gps only read the first part. So so many cant get increased dose for neuro symptoms.

  • I have emailed NICE today to get them to clarify.

    If I am right,I will post their reply (due between 5 and 18 days) here and you can all take it to your doubting GPs

  • someone else may have done this in the past,I am new-ish in this forum

  • I'm not what needs clarification. If I'm right -

    If no neuro symptoms: 6 injections over 2 weeks, then one every three months.

    If neuro symptoms: Injections every other day until the neuro symptoms stop improving. Then one every two months -to prevent neuro symptoms recurring..

    That should read 'I'm not sure what...'

  • Thanks for that

    yep thats exactly how I read it.I want my daughters GP to see it from NICE via email to me as he obviously has trouble getting his head round it.In fairness I have the time to trawl internet and my research fuelled by wanting to help my daughter

  • Your doctor will have a copy of the British National Formulary in, or on, his desk. That book is their guide to prescription medicines. The text you've quoted from NICE is exactly what's written in the BNF.

  • yes I know it is.

    I am doing doc a favour show the NICE email reply when I get it-he/she wont have to open the book-simples (you'd think) haha

  • "If neuro symptoms: Injections every other day until the neuro symptoms stop improving. Then one every two months -to prevent neuro symptoms recurring.." When pigs fly!!!

    If neuro symptoms: 5 injections every other day, blood test in 3 months, come back in 6 months for another blood test. (B12 103 (180-!000)

    Did he read the copy of the BCSH Journal I took him.

  • I think one problem with the NICE guidelines and BNF is that they put Pernicious Anaemia with other macrocytic anaemias. I wonder if they explain in the BNF and NICE guidelines that PA can occur without macrocytosis. At least this is made clear in the BCSH Cobalamin and Folate guidelines.

  • Its also hard to find stuff on the website,I cant find the stuff I found yesterday!!!

  • yes I see what you mean.I do have sympathy for some GPs with time restrictions on visits but I think theyre blaze about PA....

  • Here's a thought. I am reliably informed by my daughter who is a pharmacist that the BNF is reviewed according to the way gps are actually prescribing. It is intended to guide them and not to be an absolute dictat. If we are unable to persuade them to increase frequency of injections we may find the neurological protocol is removed when it is next reviewed.

  • its so frustrating..........you'd think that B12 was expensive .....or rare.......or dangerous if over prescribed.

  • I went to my doctors today to request more frequent jabs. It wasn't my usual doctor. She started by saying 'we only give them every 12 weeks' I told her some of my symptoms and she said dizziness and aches and pains weren't symptoms of B12 deficiency and that pins and needles was probably something else!! I've been offered another quite extensive blood test for thyroid, B12 and folate, and other things too many to mention, I am having the test in the morning. I'm not happy and I fear that if my B12 result shows within the normal range the GP may stop my injections all together, despite testing positive for PA. I will let you all know what happens as I have found it so useful to read other peoples comments and experiences. I am a member of PAS and will contact them if I can't get a decent response from my GP

  • shipscat Download my summary document and print out the BMJ paper that is linked therein. frankhollis.com/temp/Summar...

    Page 10 of that paper includes a diagram showing the various symptoms od B12 deficiency. Paraesthesia is the medical term for your pins and needles.

  • Thank you so much fbirder I will present my doctor with a copy of the documents and hopefully she might then take notice. I'm not going to give up, I'm only 50 and i'm not going to let them wright me off just yet.

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