Injection every 4 months

[Sally39]

Also the doctor took me off folic acid and said to have my injection every 4 months

[Sleepybunny]

Hi Sally39,

I'm assuming you are in UK. Patterns of b12 treatment can vary from country to country.

If you have a confirmed diagnosis of PA and you are in UK, I'd suggest joining and talking to PAS. They can sometimes intervene on behalf of PAS members.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

PAS has a useful article "An Update for Medical Professionals: Diagnosis and Treatment " ...only available to PAS members. See link below.

pernicious-anaemia-society....

Following links have info about UK B12 treatment.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

UK B12 Blogs

There are stories on each blog about people whose injections have been stopped

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I am not medically trained. I wish you good luck with getting the level of treatment you need.

[GGourmet in reply to Sleepybunny]

NICE does say every 3 months so they are opening themselves up to being sued.

[Foggyme Administrator]

Hi Sally39. Not sure why your GP has decided that you only need injections every four months. This is not in line with UK treatment guidelines.

The maintenance dose should be every three months. And if you have ever had neurolgical symptoms, you should have injections every eight weeks (in both cases, you should have had an initial six loading doses. Where neuro symptoms are present, injections should have continued every other day until no further improvement - then every eight weeks.

If your GP made this decision based on your serum B12 levels following injections, this is a nonsense. Once treatment has commenced, serum B12 testing is meaningless (and not recommended unless looking for low levels) - levels will be high simply because lots of B12 has been injected - and levels should not be used to guide (or withhold) treatment - most especially,if you are still having symptoms.

There's more information in the PAS pinned posts to the right of this page - or st the bottom, if using a mobile phone. Well worth a read as you'll be able to see what your GP should (or should not) be doing in terms of treatment - and further investigations/dignaosis of cause etc.

Also worth reading through all the links Sleepybunny has left 😉😀.

Good,luck and post again if you need more help.

👍