treating pernicious anaemia

Here We Go Again!

15 Mar, 2017

We received a telephone call yesterday from a very distraught member who was diagnosed with PA twenty-three years ago and has been having monthly injections since then.
Yesterday she turned up for her monthly treatment only to be told that “new guidelines from NICE state that patients with PA should now be treated by tablets”.
She was then prescribed 50mcg of Cyanocobalamin tablets.

We know of two members of this society who use oral tablets instead of injections but they take enormous doses in order that, hopefully, some of what they swallow will be absorbed ‘passively’ in their gut. The doses they take are 2mg each day. The lady was prescribed just 50 mcg (there are 1,000 mcg in a mg).
We are unaware of any new NICE guidelines relating to this. In fact, there are no NICE guidelines relating to Pernicious Anaemia, just a Clinical Knowledge Summary which has a glaring error in it (we’ve pointed this out to NICE who are considering revising it).

Today we will contact the Health Centre concerned by telephone and ask for an explanation of why the member’s treatment has effectively been stopped.

Readers may well remember that a few years ago a similar thing happened at a Health Centre in Dorset which we became involved in. In that case, every patient with PA was written to and told to buy 1mg tablets from Amazon. That policy was reversed following our involvement and injections were re-instated.
Injections are safe, cheap and highly effective as a replacement therapy for B12. However, the cost of nurse time in administering the dose is enough to make health services consider saving some money and time by replacing injections with tablets.

Be aware, that there are no new Guidelines by NICE about replacing injections with tablets.

22 Comments

  1. L. Palfreman

    This is a worry with my 90 year old mother. Diagnosed (late) PA 8 years ago, she’s only on quarterly injections (I think she needs more). They keep taking blood samples and I’m so worried they’ll try to put her on tables (it has been mentioned). I realise the cost of sending a nurse to administer must be quite high, but we’d be willing to take her to the surgery if needs must. I really can’t understand why they refuse to understand the importance of regular injections.

    Reply
  2. Frank Hollis

    “However, the cost of nurse time in administering the dose is enough to make health services consider saving some money”

    Or, they could make it available OTC – as it is in many other countries.

    Reply
    • Ellj

      Here here, I have had my injectîons stopped….Given sublingual 1 mg but I feel sooooo ill again.
      GP ordered blood test to prove to me I am fine !
      Since I SI a blood test might prove it to go but I know I need injectable b12

      Reply
  3. barbara phillips

    i live in the united states and i give myself my own injections.but i have to do it weekly.the cost a month is only $24.00

    Reply
  4. Melanie barnes

    Why don’t they teach us to self inject , For those that want to . surely this would save money .

    Reply
  5. Aileen Shepherd

    I certainly wouldn’t want to be in the physical and mental condition that i was in pre injections that started over 22 years ago!! I would be frightened and angry with the system not only for me but others as we’re the one’s whom have to live with symptoms even on the injections.

    Reply
  6. Sue C

    Time to make B12 injections available without prescription and for all patients who need them to be taught to self-inject.

    Reply
  7. Claire Ragin

    Seems like it should be treated similarly to diabetes–make it available for patients to self-inject as needed. If someone chooses to do tablets instead of injections, it’s their choice.

    Reply
  8. Anonymous

    In the US, I pay out of pocket for hydroxycobalamin serum and hypodermics and my husband gives me my injections. I need injections of 1000 mcg per week in order to maintain a level above 450. I have MTHFR and other genetic mutations that make B12 and folate processing difficult, in addition to having PA. I am glad you are there to support this poor woman because they don’t call it “pernicious” anemia for nothing.

    Reply
    • Josee Allen

      Thank goodness that in the USA we can help ourselves and not wait for some government edict to support PA patients. I use the patches which seem to work, I pay for them and get them mailed to me.. Does no one in England tell people that ‘swallowing ” pills will have no effect at all on PA? In the USA they sell over the counter ‘sublingual’ tablets of vitamin B12..but they MUST be put under the tongue to have an effect. PA patients lack the digestive catalyst that makes Vitamin B12 available to the system so bypassing the stomach is essential; either by pills under the tongue or by injections.

      Reply
  9. Juls Steele

    Do they make the medication as a patch? Or is that not so effective? My sister has PAS and I know she dreads the thought of the medication being withdrawn. I only ask about patches as I have recently changed from tablet meds to patches for my pain management (JHS) and found it more effective and less trauma on my stomach with meds being absorbed properly – Juls S

    Reply
  10. Marian Austin

    I was diagnosed in 2010 but in 2014 after speaking with my new GP about symptoms and dosages, I was taken off any medication. My GP told me PA was “in my head” and referred me to a psychiatric clinic despite previous test results. To date I have been unable to get any treatment from my GP.

    Reply
  11. Shona Dryburgh

    For goodness sake – how long are we going to have to wait to be allowed to self inject. Happily I can say I’ve just moved from quarterly to six weekly to four weekly in a very short time. Why don’t they produce hyperdermics in the same way as diabetics receive insulin? This would make life so much easier. I live in Scotland and regularly have to travel to Lincoln to care for an elderly relative, but her hospital appointments and treatments don’t allow for my injections and sometimes it’s impossible to fit my injections in – so I have to suffer until I can get home again and then it’s a two week wait to see the nurse HELP!!!!!!

    Reply
    • Cath Nolan

      I’m a retired nurse and self inject, I also inject both my daughters. therre is no reason why a person can’t be taught to self inject, people with Addison’s disease and their relatives are taught to inject their hydrocortisone incase of emergencies, so it’s about time we started lobbying for people with PA to be taught to give their own, if they want too,

      Reply
  12. Clive Parsons

    I’ve had cyanocobamalin 1000mcg injections for 25 years for P.A. and my nurses love me me because I’m in and out within four to five minutes which gives them time to catch up with their paperwork and have a cup of coffee before their next scheduled 10 minute appointment.

    Reply
  13. Terry Moss

    Having had PA for 24 years and surviving very well on 3 monthly injections, stories like this quite honestly terrify me.

    We put our faith in the professionals but some of the decision making for the sake of costs surely goes completely against the tenet of our wonderful NHS.

    Reply
  14. Lynette Faris

    Wish me luck please – I have an appointment with GP this morning to discuss why I can’t have my injections – been having 3-monthly injections for 17 years since a Schillings test proved I have PA (thyroid issues arrived at the same time). Now the GP is saying I have to have tablets instead, I have prepared my arguments – the first one being, if I have no intrinsic factor to take B12 from my diet, how will I be able to take it from a tablet?

    Reply
  15. Pam

    I like Lynette above very interested to see how you get on as I’m due to see my dr next week,
    I’ve had PA for nearly 20 years, been told mines due to not having in instrinct factor, so cannot absorb Vit B 12, orally if they bring this in, and I’m put tablets to take on oral basis, they won’t work as I was told originally I could not take it orally vit b12, I have been on monthly injections for a few years now, so what wil happen, it’s been a struggle getting through the last 20 years as it is, and the mind fogs, lethargy, constant tiredness, nerve pain,

    Reply
  16. Beew

    my daughter went for her B12 once and nurse said she didnt need it as her B12 count was now fine.
    She has PA and under 30
    She rang me to tell me I made her go straight back in; nurse went to check with GP though!!! Grrrrrrrrr

    Reply
  17. Hons

    I agree with the comments that ask ‘why can’t we self-inject like diabetics do?’ I’ve often wondered that. Luckily my doctor’s are really good. Fingers crossed that doesn’t change!

    Reply
  18. Julie

    My husband has just had his injection stopped. …no notice or consultation. …what does the future hold???

    Reply
    • Martyn Hooper

      If you are a member you can call the helpline – just call the office between 8:30 and 12:30 Tuesday, Wednesday, Thursday and Saturday

      Reply

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