Have recently been diagnosed with Pernicious Anaemia,I have had my first initial dose of five injections over a period of forty eight hours between ,I am now due my second injection and on ordering the solution
I was sent only one bottle of the solution,can anyone tell me if this is given every three months as a single injection and not five like the initial booster dose.
Not sure where you are based so what the protocol is. People vary a lot in how long they retain B12 and how they respond to it. In germany maintenance shots would normally be monthly - in UK is 3 monthly if no neurological symptoms- if there are neurological problems then it should be every other month - and if there are neurological problems then your loading shots (in UK) should be every other day until there is no further improvement in symptoms (with a review at 3 months).
If you are in the US or somewhere where cyanocobalamin is being used then maintenance shots should be at least once a month.
Hi Annette,
Are you based in the UK?
You may find it helpful to speak to the PAS (Pernicious Anaemia society).
pernicious-anaemia-society....
01656 769 717
Office open every day except Sundays from 8am till 2pm. If you leave a message they should get back to you within a few days. If you join the PAS ( lifetime mebership cvosts about £20) you can access details about local support groups in the UK.
UK treatment
In the UK, details of the recommended treatment can be found in the BNF (British National Formulary) Chapter 9 section 1.2. Your GP, if you are UK based, is likely to have a copy of the BNF on their bookshelf. Your local library may have a copy or it's possible to buy a copy from a popular internet retailer.
Details about UK treatment are also in the "BCSH Cobalamin and Folate Guidelines". I read the whole BCSH Cobalamin Guidleines, printed off a copy and gave it to my GPs so that they would be up to date with recent guidelines. Page 29 is a diagnosis flowchart with recommendations for diagnosis and treatment. I was told the NHS should be following this document. Some GPs may not have read these new guidelines and may be using local NHS B12 deficiency management guidelines that have not been updated recently.
"I have had my first initial dose of five injections"
If you are UK based I am surprised that you are only having 5 loading injections as I'm pretty sure the BNF recommends six. It makes me wonder if your GP is using local NHS guidelines rather than the BCSH Cobalamin guidelines.
Do you have any neurological symptoms? See Symptoms Lists below. The UK recommended treatment for those with B12 deficiency and neurological symptoms includes loading doses over an extended period (longer than two weeks) and maintenance doses at shorter intervals. This following link contains details of treatment similar to that in BNF, in the Management section.
patient.info/doctor/pernici...
Symptoms Lists
pernicious-anaemia-society....
See Symptoms Checklist, I ticked all my symptoms and gave a copy to my GP.
b12deficiency.info/signs-an...
Adequate treatment of B12 deficiency is worth fighting for because inadequate treatment can lead to permanent neurological damage.
Useful UK Documents/Articles
ukneqas-haematinics.org.uk/...
Google "BCSH Cobalamin and Folate Guidelines
Useful Websites
Martyn Hooper is the chair of the PAS and has written several books about PA an dB12 deficiency
Useful Books
Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart
Reading this book was a real light bulb moment for me.
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper
Very up to date with new guidelines. I gave a copy to my GPs.
When I first joined the forum I found it helpful to read lots of the threads. I picked up a lot of info this way.
I also found it useful to get copies of all my blood test results and track changes over a period of years. I learnt not to accept being told everything was normal after getting copies and finding everything was not normal.
I am not a medic just a patient who has struggled to get a diagnosis.
Thank you Sleepbunny I have read all the links you sent me and feel better informed now . Annette.
seeing neurologist, advice on b12 injections welcomed…
Has anyone had insomnia from B12 injections?
