B12 - Starting Injections [June'19]

[baboigeorge83]

Cytamen Injection - Cyanocobalamin BP is prescribed by G.P.

Starting on this today and followed by every three months -

Shall report the results to compare with other patience !

[clivealive Forum Support]

Hi baboigeorge83 I assume you are not in the U.K. as cyanocobamalin is no longer "prescribable" over here.

Do you know why you are being treated with Vitamin B12 injections?

Are you just having one injection to start with?

Normally with cyanocobamanlin repeat maintenance injections are every four weeks - not three months.

Do you know if your Folate level was tested recently?

I wish you well

[baboigeorge83 in reply to clivealive]

THANK YOU, clivealive -

I've to check on the medication & frequency !

[Gambit62 Administrator]

If you are using cyanocobalamin then you will need monthly maintenance doses - this relates to the fact that this is the average time that cyanocobalamin is retained in the blood. However, people vary a lot. 3 months is the frequency for maintenance doses in the UK where we use hydroxocobalamin - which is generally better retained than cyanocobalamin so needs less frequent injections.

[baboigeorge83 in reply to Gambit62]

I shall be finding out about the blood test results -

Will be reporting on the forum

THANK YOU

[clivealive Forum Support in reply to Gambit62]

Somewhat surprised his GP has "prescribed" cyanocobamalin (cytamen) injections if within the U.K. considering the struggle I have

[Gambit62 Administrator in reply to clivealive]

the Association of American Family Practitioners has a link in their section on B12 deficiency to the BCHS standards and I wouldn't put it past a GP to look at that, see 3 monthly and assume that goes for both cyano and hydroxo.

[Sleepybunny]

Hi,

If you're in UK, I'm surprised your GP has prescribed Cyanocobalamin injections.

My understanding is that Cyanocobalamin injections are no longer prescribed in primary care in UK. I believe that GPs sometimes prescribe low dose cyanocobalamin tablets for dietary B12 deficiency.

In UK, it's normally hydroxycobalamin in the NHS. See BNF links below.

I guess it might be different in private healthcare.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

NICE CKS

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12d.org holds support meetings near Durham, UK

b12d.org/event

I am not medically trained. More B12 info in pinned posts on this forum.

[baboigeorge83]

Thank you, Sleepybunny.....

I was told my reading is 145 where as it should have been 191 -

Doesn't really understand the blood count to comment

Will follow up to report !

[pvanderaa]

Default period for cyano is monthly, it is hydroxo that is given every 3 months. GP needs to know what they are prescribing