Hi everyone, I’m new here. Had PA since approx 2008, currently have injections every 8 weeks at my Doctors.
I don’t feel every 8 weeks is enough so I’m looking to SI. I’ve read the leaflet on how to do it, but can anyone point me in the direction of dosage instructions, what I need to buy along with the B12 please? I’ve seen I can get the B12 from Germany.
Thank you 😊
1mg/1ml single use hydroxcobalamin. Look at the above post from. Wedgwood.Have you been refused more frequent b12 injections from your Gp??
Put it in writing to gp.
How what snd when symptoms s return.
I managed at present to get a 2 weekly NHS prescription
Can be issued
If in the best interests of the patient.
Recently the new management reviewed my regime by asking a neurologist I've never met for advice.
For present still santioned.
More to do with covering their backs I think .
Hi thank you for your reply, that’s great thanks, have them in my basket on versandapo!I had to fight tooth and nail to get them every 8 weeks instead of 12, so I don’t think they would do it, and also the stress of it just makes me think just do it myself. I don’t mind the injecting I had to inject my stomach for just under a year with blood thinners. Thank you x
these are intermuscular injections should be done by nurse dr etc
Hi,
"I don’t feel every 8 weeks is enough"
Do you have neurological symptoms now or did you have them prior to starting treatment?
If you have or had neuro symptoms, how many loading injections did you get at start of your treatment?
BNF link below outlines two patterns of treatment for B12 deficiency in UK
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
If you have/had neuro symptoms and were only given 6 loading injections at start of treatment, I think you could ask GP to restart loading injections according to treatment pattern for those with neurological impairment.
This is a loading injection every other day for as long as symptoms continue to improve. Could be weeks or even months of them as not set time limit.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neuro symptoms present.
Might be worth you tracking down the local B12 deficiency guidelines for your area and comparing them with BNF hydroxocobalamin link and BSH and NICE CKS links below.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG (Clinical Commissioning Group)/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
PAS can offer support and pass on useful info.
PAS membership is separate to membership of this forum
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
I had to resort to self injection as NHS refused to treat me. I fought for a long time to get treatment and in the end I exhausted all possibilities and was concerned at my deterioration.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Thank you. I don’t recall how many I had in the beginning, it was about 14 years ago.I’ve sought help from my GP on a number of occasions, and apart from eventually changing my injections to every 8 weeks and refer me to a rheumatologist, I’ve had little help.
I have a number of other conditions to go with this, including bile acid malabsorption.
Some of my symptoms include
Fatigue to the point where I will be in bed for over 20 hours per day for a week or so meaning time off work, headaches, dizziness, feeling like my legs don’t work, palpitations, pins and needles, feeling weak.
I have ordered the equipment to do the injections myself in between GP appointments. Unfortunately I have very little faith in our health system after being wrongly diagnosed with IBS for 15-20 years by various GP’s and specialists, when all along I had bile acid malabsorption which could have been treated. Instead I spent most of my early-mid adult life with no quality of life. I’d rather take matters into my own hands at the moment as I don’t believe the NHS has the resources to help me with all the conditions I have.
dont do this go to a doctor or nurse to get your b12 injections
Hi I feel I need them more often than they can offer. A lot of people had to do there’s through covid when GP’s stopped doing them, fortunately mine didn’t. I am familiar with injecting myself so I am not too worried about it.
Can I ask why you are advising not to self inject when so many on here, including admins, recommend it and do it themselves successfully?
First SI, the pain, ouch!
Advice for SI (self injecting)
SI IM first time - thank you for your help
Empowered by first SI
Newbie - PA? B12? symtoms, help please 
