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Pernicious Anaemia Society
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PA with neuro involvement

Hi since my last post I've had x3 alternate day injections of hydroxocobalamin and feeling much better. Neck and head pains have disappeared but other Neuro problems persist. I've to have another x3 injections this week but after that I'm not sure as the GP thinks 1 week will be enough !!!!!!!!! Supposed to be treating me to BNF guidelines I requested a referral to hemotologist but GP thinks my bloods are fine so they won't do anything but she has referred me to Neuro and I have an appointment for this Wed. When I was diagnosed with PA in 2002 my b12 was 154 ng/l and folate 1.4 . Recent bloods reveal b12 >1500 folate 9.1. Interestly I have mildly abnormal liver test ? Low total white cell count and low neutrophil

7 Replies

Hi Kapat1 these are the guidelines you doctor should be following

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.

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

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


I wish you well


Thank you for ur reply at Preston neuro today

1 like

What is wrong with these doctors? It's been known for a very long time that people with PA need shots for life!!


Kapat1 do you mind me asking how long you had to wait to see neuro at Preston? I am still waiting after a referral in March!! I know they are busy.


The GP made an urgent referral and I only had to wait a week


I'm dreading going to be honest, please let me know how you go on. I really hope seeing him helps you get the best treatment possible xx


Just been to Neuro at Preston. Reflexes and test normal , no further headaches so no treatment needed!!!!!!!


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