Pernicious Anaemia Society
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prep to confront gp

I need to get all my facts right. I have PA and serious b12 deficiency....plus severe neurological syymptoms...... I need b12 injections more frequently than she agrees. my neuropathy is treate by pregaberlin 350 twice a day - yet I read that ' the symptoms should be treated by b12 injections until the symptoms disappear'. so you can see I am confused...... help!

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Hi,

When do you next see GP? Perhaps you could speak to PAS before your next appt?

pernicious-anaemia-society.... 01656 769 717

PAS office closed until June 15th.

Reply

How often does she want to give you injections? According to the British National Formulary this is the dosing regimen:

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

She should have a copy of this in/on her desk. Make sure she reads the second paragraph, many doctors stop after the first.

Treatment is 3 injections per week - until there is no further improvement in the symptoms - then it is once every two months.

For many people that is not enough. That's when you may need to start thinking about taking your treatment into your own hands and injecting yourself. But do have an attempt at persuading the doc, with the help of the PAS if necessary.

The pregabalin is to treat the pain produced by the neuropathy. It does nothing at all to treat the neuropathy itself.

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fbirder thank you so much - you have made it very clear. I appreciate that you took the time. I now understand its the B12 I need more frequently to help with the neuropathy and the awful pain I have in my feel and legs. my gp really seems to know very little about PA.

1 like
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Sadly few GPs are well-informed on this subject and what's more they can be wilfully obtuse.

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I agree totally.both my gp's show little clinical knowledge other than what everyone can see in a pamphlet..!

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