PAS Conference 2019: Treating Pernicious Anaemia – Getting it Right

27 Oct, 2019

The most common complaint received by the Pernicious Anaemia Society relates to the treatment of the disease. It is time for the ‘one-size-fits-all’ treatment to be reappraised. This PAS conference will highlight the Good, Poor and Unacceptable Treatment encountered by patients with Pernicious Anaemia.

Unfortunately, very little work has been done on the treatment for Pernicious Anaemia since the early 1960’s. We do know that in the U.K. patients were prescribed a 1mg injection of B12 every month, and the British National Formulary (BNF) changed that to every two months in 1974 and then to every three months in 1984. We are unaware of any scientific basis for the changes. But we do know that, following the production of a report, and several meeting with the BNF, the treatment is now a 1mg injection ‘every 8-12 weeks’.

Over 70% of telephone calls taken by the PA Society relates to the treatment of the disease. We’ve heard it all over the years, from patients who have been told that they are of a certain age and no longer need the injections, patients being told that their B12 levels are too high and they are in danger of developing serious medical conditions and that no further injections will be prescribed until several months have passed (this happens when patients have their B12 levels checked after requesting more frequent injections). Patients have been told that they have Pernicious Anaemia and so they need to eat red meat, whilst other patients pay privately for injections to supplement their needs. Others use a variety of alternative delivery methods to supplement their prescribed treatment including nasal sprays, sub-lingual sprays and lozenges, skin patches and even anal suppositories. However, the efficacy of all of these alternative treatments have never been subject to a thorough evaluation. For some patients these alternative treatments mean they can carry on with their everyday lives whilst for others they make no difference at all.

This conference concentrates solely on the treatment of Pernicious Anaemia. You will hear presentations from professionals with an interest in this field, most of whom have carried out research for or with the Pernicious Anaemia Society. We want the conference to be a forum for the exchange of ideas and experiences – from professionals and patients and we have built-in to the day workshops that makes this possible.

This conference has been made possible by the kind and generous donations from a number of members of the society, we have received no external funding, and I would like to thank those individuals on behalf of all members of the Pernicious Anaemia Society, for their benevolence.

Tickets for the conference are now available through the link below. We have a limited number of tickets available so be sure to get yours now. You’ll also be able to find out more about the speakers and their presentation, and the schedule for the conference. We look forward to seeing you there!

8 Comments

    • Petra

      Please click the link at the bottom of the (news) email to change your email address, thank you!

      Reply
  1. Lin Van Zyl

    Thank you for persuading the powers that be to at least reduce the time between injections to every two months. In South Africa I was accustomed to one per month. My doctor here insists that’s not necessary and the overwhelming tiredness I experience is psychological. Yeah, right! How does one go about getting an injection on alternate months? I am 73 years old. Thanks again.

    Reply
  2. Christine hester

    My GP has stopped my 3 monthly B12 after nearly 35 years as my blood tests “levels normal”. Surely my levels are normal because they are in my system?
    I now have brain fog, very bad tingling going up my legs and am shaky.
    My B12 was due 4th November- what can I do to reverse this decision.
    I had thyroid surgery 1971 and too much was removed. Been on levothyroxine 100mg ever since.
    My energy levels are zero

    Reply
  3. Michelle Henson

    Here in the United State, my former PCP (GP) laughed at me and said “It’s just a vitamin!” I have been misdiagnosed, most likely for years. The bad nerve pain started in 2013 and I was diagnosed with fibromyalgia. Diagnosed this year by gastro after she found signs of, and confirmed, autoimmune gastritis

    Reply
  4. Richard White

    Was diagnosed a few years ago and have been given the 3 monthly injections since. I start to feel very low after month two, feeling tired all the time and my arms tingles return. My GP says I am imagining it. I’ve asked if I can have a test for on B12 levels and they say it isn’t necessary. Was level of 72 when diagnosed. Would love to get some help.

    Reply
  5. Sandra Slack

    Having terrible symptoms had two weeks of injections every other day, I’m told three monthly now but feeling very unwell. Finished my first injections Saturday23rd November. I have tingly numb feet. Very bloated stomach wanting to pass urine all the time pressure feeling had that for months not an infection. Only very small amounts, only way I feel comfortable is lying down can’t lie down all day! Any advice please I would be so grateful. Sandra Barnard Slack.

    Reply
  6. David Cheshire

    My pernicious anaemia was diagnosed immediately, over 30 years ago. How can it still be so poorly recognised by GPs the world over? How can any GP or PCP go through medical school and say that B12 is only a vitamin?
    The 3-monthly injection therapy may be enough for little old ladies who never take more exercise than a walk to the local shops twice a week – apologies to any such readers, who may also find the therapy inadequate.
    In the early years, a GP heard that my argument that 3-monthly did not work for a very active person, and allowed me an annual prescription of 10 x 1000mcg/ml, which has been granted to this day. I was also given permission and equipment to inject myself, subject to an annual blood test.
    However, 10 injections a year only helped a bit and I had to search for alternative sources of injectable B12 outside the UK, and found them. Syringes and needles are available in the UK outside the GP surgery, and I inject at 3- or 4-weekly intervals, sometimes a little longer, as and when it feels necessary.
    I’m still very active at 75 – six or seven gym classes a week, amongst other forms of exercise.
    My injection sites are the top-left quadrant of each buttock, used alternately.
    I hope that the correspondents in October and November 2019, and anyone else, may find some relief from their symptoms in my example.

    Reply

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