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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beew
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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..
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.
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.
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.
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
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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