bnf b12

Restrictive treatment changed

28 Oct, 2018

Yesterday we received confirmation from the British National Formulary (BNF) that they have changed their recommended treatment for Pernicious Anaemia without any neurological involvement. It’s only a small change but it’s a big step towards our final goal of getting patients treated according to their individual needs.
We know that most of our members struggle with the UK’s three-monthly treatment regimen and most will need an injection sooner. The new treatment regimen has been changed from ‘every three months’ to ‘every 2-3 months’.

BNF Dose amendment

This is what they say:
“We have reviewed the dose of Hydroxocobalamin for the treatment of Pernicious anaemia and other macrocytic anaemias without neurological involvement. As of September this year we have amended the dose to the following;

BY INTRAMUSCULAR INJECTION
Adult: Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2-3 months”.

And they say more:

“As you have highlighted this previously was 1 mg every three months which we understand was restrictive to treatment”.

Treatment based on individual needs

“Although this is only a small change it does lead the way to patients getting treatment according to their individual needs” says PA Society Chairman Martyn Hooper MBE.
“We will continue to campaign for treatments based on the individual needs of the patient but this small but significant change means that we are being listened to and we can bring about change by producing relevant evidence” he says.

So, if you are struggling to manage in that third month please point your GP towards the new guidance in the BNF.

Our thanks to Dr. Nicola Ward for her work in producing the Review which was well received by the BNF.

48 Comments

  1. Rita griffiths

    I am lucky that my doctor has advised my injection every four weeks. Worried when he retires soon others will not continue. Even four weekly still may problem, would be happy to help with any research

    Reply
    • Fay Mitchell

      I live in Spain.My injections have been 4 weekly.I spent the last week non functional, neither physically or mentally

      Reply
  2. irene cameron

    Good news for some. My GP only looks at blood tests. My levels are high so he wouldnt change to a more frequent injection.

    Reply
    • Kristina Hart

      Yes, I thought this too. I know if I go to my GP and ask for more frequent injections, they will send me for a blood test and if it’s ‘high’, they will refuse. What happens then? I feel constantly exhausted. Can I appeal? I would be interested to know how we stand, Irene x

      Reply
      • Joanne Shevlin

        Hi, I’m the same had to have a blood test & told it’s too high… I’m trying to find on here the paperwork Martyn suggested I take… I see a BNF link & wondering if that’s what I need? I’m not looking forward to the appt as they already give me T3 (that’s supposedly expensive & some GPS have stopped this… The thyroid Consultant endorses the ten, but states many GPS have stopped giving it)… So, I scared to upset the GP in case they stop that tab, as again their knowledge is ridiculously behind! Just what we don’t need… So I know where you are at… Jo

        Reply
    • Theresa Taylor

      Irene,
      If your GP only looks at blood tests, then he should know that the ‘total blood serum test’ performed by the NHS is unreliable

      Reply
  3. Vicky Hurrell

    Small leap forward in the treatment needed.will improve the lives of many.Still a need for some to have more frequently than eight weekly.A step forward at last…..

    Reply
  4. Teresa Wooldridge

    Wow! I am overwhelmed. Thank you so much. I have been battling with my doctor as she recently changed my injections from two to three monthly because I have refused a B12 test. I have sent her all the relevant documents concerning testing once on injections also the information on the IFA test being unreliable. Thank you! Thank you! Thank you!

    Reply
    • Julie

      I am confused lol. So why the refusal of test and can u guide me in which paperwork u gave ur doc? I’d appreciate it much

      Reply
  5. Teresa Wooldridge

    Although my old doctor told me in 1992 that I had PA and would need to have injections for life I have no evidence of this on paper. My doctor stopped my eight weekly injections and changed them to three monthly with a suggestion that I have tablets. She will not listen to me and reinstate my injections back to eight weekly. Will these guidelines still be used for PA and B12 Deficiency. I do have some neurological symptoms although the neurologist said they were all in my head.

    Reply
    • Eve Davies

      This makes me so angry, it is tantamount to malpractice! Dont’ they ever listen!

      Reply
      • ThePATexan

        I couldn’t agree more! It is also cruel treatment of patients. When more cases of PA are being diagnosed by autopsies than doctors, there is a definite need for some serious change here!!

        Reply
  6. Sarah Molineux

    Step in the right direction…..just need drs to get up to speed on it

    Reply
  7. Avis Hannon

    Thank you for all your hard work on our behalf, anything, however small, is a step in the right direction. I realise how difficult it can be to get the establishment to change so this is wonderful news. Now to get GPS up to speed. To be honest I understand the difficulty there as with each surgery having so many patients with so many different needs it must be a nightmare to keep up to date with everything.

    Reply
  8. Mandi

    It was only 2 months for those with neurological signs. This change is for those without neurological involvement so a small step in the right direction.

    Reply
    • Susan

      I don’t see how they can see neurological involvement, by the time someone has symptoms, they already are suffering damage. This change may be a step in the right direction but it’s too little too late for many.

      Reply
      • Patricia O'Connor

        Like my mother.she’s 89, from Ireland. Too bad her family doctor didn’t ask her the right questions. He gave her an operation on the Ileum from diarrhea. Had numbness and tingling too. I got it worse.

        It’s too late for many!

        Reply
    • Susa

      Well as one consultant said to me guidelines are only guidelines and don’t have to be followed. Its a shame so many doctors are not well trained in science.

      Reply
    • EILEEN SMYTHE

      In my surgery it was 3-monthly full stop!

      Reply
  9. Mary

    I get monthly methylcobalamin injections from my Doctor of Oriental Medicine here in New Mexico, USA.
    I pay $21.58 monthly.
    I do need 2 a month. Trying to figure out how to budget them.

    Reply
  10. Jackie

    I am currently being assessed for PA & I don’t know anything about it. I am currently so tired & light headed all the time. I’ve been to a Neurologist for symptoms I am having but don’t know if the two are related?

    Reply
  11. Jo

    well..it is still VERY FAR from what we need, they make you ‘bleed’ for basically a ‘breadcrumb’. I need them at least weekly, and until recently it was daily. It’s good my GP does not stick to the BNF!

    Reply
  12. Clive Parsons

    Hooray!

    Reply
  13. Jayne Day

    I was on injections every two months, but the Nurse kept checking with the GP, who then told me to have it every three months and will not change that. I was on every two months because my results differed so much and injections every two months, kept them at the right level.

    All I am told by the GP is that “Everyone” is ok on three month injections. Why do Professionals categorise everybody the same, when everyone is an individual and should be treated accordingly?

    Reply
  14. Sarah

    How do you get it in Britain? It’s over the counter in Australia so theoretically you could top yourself up. I usually do it myself anyway.

    Reply
    • Aime Talijarv

      Hi Sarah, where do you get over the counter methylcobalamin in Australia? When I was diagnosed with PA a few years back, my doctor suggested I get sublingual tablets from iherb online. It would be much more convenient to get it over the counter whichever way it comes.
      Aime

      Reply
    • Angela Holcroft

      Sarah , where do you buy it . I’m recently diagnosed , had to diagnose myself as a retired nurse !!!!! Im in UK , and looking for places to buy so could give it myself if they continue to stick to 3/12 treatment . Thanks , RSVP xx

      Reply
      • Imogen McCready

        I regularly buy my hyrdroxocobalamin from an online pharmacy in Germany…However you can also buy it from Intravita International which is based in Essex I have ordered from this company also. orders@intravita.com.

        Reply
    • Donna Robinson

      Hi…I buy it at any pharmacy in Aust..never a problem…had a Schilling test in 1976. Was diagnosed back then..they dont do that test here any more.. 2 years after the test I was diagnosed with type 1 diabetes…apparently they go hand in hand…then a endochrine specialist who was treating me for diabetes said i was too young (29) to have PA and took me off the B12 inj…..a year ir so after that i was so tired I put myself back on the injections…no dramas..but the B12 vialcand get GPs nurses to inject me…alk in Australia 🙂 (am now 65)

      Reply
  15. Jobeth

    All about money. Why should we have to beg or die for a simple cheap vitamin to keep us alive. I’ve no patience for them now. I inject myself as often as I feel the need. I’m not dying a slow death caused by the NHS. 20 years now and I’m doing a great job at it.

    Reply
    • Angela Holcroft

      Jobeth that’s how I feel , just asked Sarah how to buy it but she’s In Australia . Do you know where in UK ? I’m a retired nurse so not a problem xx

      Reply
  16. Jemma

    Thanks to this change and you sharing the information my GP has finally agreed to 8 weekly injections after over a year of keeping a symptom diary.
    She says she learnt something new today.
    Onwards and upwards for me I hope.

    Reply
    • Heather Mackay

      What were your symptoms .. I also have symptoms but unsure as to how I can accurately interpret them. I also have under active thyroid so for me it’s difficult to know which one is causing the problem. Now I’ve got the added problem of being recently told I have T2D altho not on medication as yet.

      Reply
  17. Christine

    On the NICE website the hydroxocobalamin entry now also says that if you are an adult with “neurological involvement” from pernicious anaemia, then treatment is “Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.”
    I take this to mean that if you have neurological signs associated with pernicious anaemia you can have an injection every other day until they stabilise. I think the wording is ambiguous, but still ….

    Reply
  18. Juanita Bendelow

    I would like to know why my GP insists that I could overdose if injections are more frequent than 8wks.I suffer with really bad Tinnitus and numbness.

    Reply
  19. Anne Harrison

    I’ve been having monthly injection for PA for 4yrs, now after a blood test my Dr. has stopped them for 6 months due to levels stored in my liver! It has literally blown my mind!

    Reply
  20. Anne

    My B12 levels in a blood test are in excess of 2000 and immeasurable. I have lost count of the times my GP’s have insisted that I should not have any injuections until my levels reduce to ‘normal’. I have battled each time to have them remain at 4 weekly ,each time I have succeeded but so stresssful having to go through the whys and wherefores each time. I hope that NICE complete their guidelines soon to add weight to BNF

    Reply
    • Kristina Hart

      Oh Anne, I absolutely feel your pain! I’ve had the same experience. With these changes to the guidelines, I will be going back to request more frequent injections. I’ve had mine stopped before and I ended up really ill; never again. I think we’re in for a fight. I wish you the very best of luck x

      Reply
  21. PAM BROWN

    I so empathise with people not been given B12 every two months when they really need it.My GP stopped my two monthly injections completely after a blood test show high levels.This almost destroyed me as l couldn’t function.High levels didn’t mean my body could use it. Contact with the society helped me and after a struggle l returned to injecting myself every two months( GP said it was expensive for a nurse to do ! ).My worry now is that the GP retired and l have an overwelling feel that my new GP will stop them.

    Reply
  22. Martha

    I was diagnosed 7 years ago after years of complete exhaustion, loss of sensitivity in my finger tips and other significant neuro issues. Now that I have done more investigation, I even think PA was the cause of my unexplained infertility. But the initial injections were a god send. They gave me my energy back, I felt so normal. It was amazing. However, a few months after the load shots, I started feeling fatigue. I didn’t think much about and kept plugging along. I don’t even know why because I all but gave up on doctors, but I decided to go to a GP who practiced a blend of Western and alternative medical modalities. She tested all of my vitamins, minerals, proteins, and gut flora. We talked about PA and she suggested that even MONTHLY shots are very often not enough. She said that while the blood serum can show normal or even too high of levels, that doesn’t mean it is at those levels in the tissue. She prescribed a COMPOUNDED version of Methylcobalamin and had me change to WEEKLY shots. It made a big difference. But then when I moved, my new doctor felt my serum levels were too high and suggested I “wean” off the weekly shots, which I did some time ago. Now that I feel pretty crappy again, I came to this website to do some research. It is clear that there is something missing with how B12 is used to treat PA. It’s not a one size fits all so you would hope patients would be trusted to help direct their care for something is very debilitating.

    Reply
  23. Christina Payne

    Hi I battled for years to get my injections to every 8 weeks which I eventually succeeded in getting and suddenly felt so much better. I have now moved to a different part of the country and been told my levels were over 2,000 and therefore must return to 12 weekly injections. Too much B12 is apparently very bad for one!!!! I also was to have a blood test which I had yesterday. I am feeling so unwell, exhausted but can’t sleep, tearful, bloated, foggy, can’t remember names of plants that I know really well. Spoke to Martin Hooper (thank you Martin) today and have printed off the relevant information to present to my new GP next week. Please wish me luck as I absolutely cannot go back to feeling this crap again. I am only 63 I want my life back!!!!!

    Reply
    • Jane

      This sounds like me. I am on 12 weekly and never feel well. How could I get in touch with Martin, if you don’t mind me asking. I’m new to this website. I wish you very much luck moving forward xx

      Reply
  24. Julie Edwards

    I too have experienced similar issues with GP surgeries and prescriptions.
    I kept asking for my jabs to be changed from 12 weekly to 8 weekly and it was only thanks to speaking briefly to Martyn and then printing off the new BNF recommendations which I enclosed in a letter to my GP that they finally agreed in April. It made a huge difference! Then I moved and have just registered with a new surgery in a different county and have been told – no one here gets 8 weekly jabs, they are all under 12 weekly! I could not go back to 12 weekly when I know how ill I will feel and now have much further to drive on the motorway to work. I will be printing the information off again and writing another letter, hopefully being able to persuade them to change my prescription. Why don’t GP’s get themselves updated on changes and why don’t they listen to their patients who are experts on how they feel?

    Reply
    • Shelley Evans

      Why do GP’s not understand or know that once you’ve been on injections, measuring your B12 is always going to show high levels because you are supplementing it!!?? Sometimes I feel like screaming this at GP’s! If I’m asked to do a B12 test, I refuse because I SI daily and I know damn well that my levels are going to be above range- or id hope they would anyway! If it’s on a form among other tests I just cross it off!

      Reply
  25. louise clavis

    Hi, I was diagnosed with PA 8 years ago. My levens were dangerously low, below 90 so I was put on Monthly Hydroxocobalamin following loading doses.

    I moved home a year ago and a few months back the practice nurse refused to give me any more injections until I had a blood test.

    I had blood test which showed b12 230 and my gp said my Folate was the lowest level he has ever seen. I have only been prescribed folic acid tablets but not b12 injections. I feel awful, every week i am becoming more and more exhausted. How do I convince my GP to give me the injections I know I need? Any advice please x

    Reply
    • Martyn Hooper

      Please join the society to access our telephone helpline

      Reply
  26. Sue Waters

    Hi,
    I have been having B12 injections every 10 weeks for the past 12 years or maybe a bit longer. Now been given tablets because of Covid 19. Spoke to the GP today who said the tablets are as good as the injections, go for a blood test and if the levels are high he will even stop the tablets. Apart from initial blood tests 12 years ago my levels have always been high. Question is if he is going to stop everything why the heck have they been injecting me for so long. Struggling to cope with the fact that my symptoms will deteriorate without treatment, my mental health is really suffering with this added worry. Any suggestions please?

    Reply

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