research b12

Surprise Findings by Research Team

20 Jun, 2018

The research programme investigating why some patients need more frequent injections of B12 than others is now coming to its conclusion. The faecal samples kindly provided by volunteer participants have been divided into three separate groups. Group one are samples from patients who manage perfectly well on being given 1mg of Hydroxocobalamin every three months; group two consists of the samples from patients who need much more frequent treatment and the Group 3 samples are from a control group of the general population who have ‘normal’ levels of B12 and who do not have a diagnosis of Pernicious Anaemia.

Unexpected Discovery

There are two different tests being performed on the samples from each group. The first of these has now been completed and it has caused great excitement among the research teams. It shows that the molecular structures in the samples from the group that need much more frequent injections differ from the samples from the other two groups.
When this unexpected discovery became known a meeting between all of the researchers was hastily arranged in London where the lead investigator was able to provide his surprising news to those attending. Various interesting hypotheses were discussed as to why the differences occurred which led to some interesting discussions.

The Next Phase

We are now currently investigating Research Funding to take this important result to the next stage while we wait the results of the second phase of tests which should be available in the next week or so. Hopefully they will show marked differences between the groups as well.
We would like to tell you more but, as you might expect, these findings have to be written up into a robust paper that will be published in a respected scientific journal in the near future and so we are unable to provide any more information.
We will keep you informed of developments.

30 Comments

  1. jeni spinks

    that’s brill. I’m still fighting docs about relapses 2 weeks before my 8 weekly jab is due. they’ve done a man and homosteine tests and said my folate might be low not b12. seen a Neuro consult who thinks it’s fibro but doing a brain/spine mri. so fingers crossed this research will change docs opinions.

    Reply
    • Ania Czuprynska

      Why on earth dont you just buy your own b12 and self inject?

      Reply
      • Margaret Sinclair

        Plain and simple Ania. It’s not affordable.
        So excited about these findings. Great news which gives us hope.

        Reply
        • Iryna

          Is this in the US? This is so broken…

          In my country (Ukraine) b12 in injectable form costs about 50 cents per 0.5mg. I suppose it is more expensive in EU, but still, even if 10 times more expensive, it should be very affordable. Maybe there is a way to order b12 from abroad?

  2. K.C.

    Fantastic! I’m excited to learn more as the research progresses!

    Reply
  3. PAULA LLOYD

    This is very interesting and very good news, I’m looking forward to hearing more and discussing it with my GP

    Reply
  4. Jet

    Good news, exited & curious for more to come #followingfromtheNetherlands

    Reply
  5. Frank Hollis

    Excellent!

    Any hints as to what the differences were?

    Reply
  6. Paulein

    Brilliant and fascinating news and I’m so glad these investigations are being carried out now. Thank you.

    Reply
  7. Sarah Dinsmore

    Very interesting findings. Looking forward to hearing further news.

    Reply
  8. Anne Abernethy-Clark

    How exciting, very interested to hear further information when the report is published. Well done to all involved.

    Reply
  9. susan berrigan

    I am really struggling on 8wkly jabs lots of numbness pins and needles in what started in fingers now spread to my arms and my legs and now quite painful too problem is no one listens to you, really interested to hearing more on your findings

    Reply
    • Margaret Sinclair

      That is the same as me Susan Berrigan. I definitely need injections every 2 weeks but because of stupid Government guidelines I can only get them every 8 weeks. I buy the Vie patches which do help. Really interested in hearing more findings

      Reply
  10. Angela Sullivan

    Looking forward to reading the final results.

    Reply
  11. Bettina Buhl

    Absolutely perfect! Can’t wait to read the study results 🙂
    #followingfromDenmark#perniciousanemiapatient

    Reply
  12. Karyl Carter

    Those findings could be life changing for so many people. I applaud PAS because without you the important strides forward would never take place. Diolch yn fawr pob

    Reply
  13. Holly

    So exciting. I can not wait to see how they grew to be different and how this can better treatments.

    Reply
  14. Patricia O'Connor

    I’m a Nutritionist, BASc. and I’m sooooo happy

    Reply
  15. Janette Miller

    I think this just confirms what PA sufferers have known for years. We are all different and one size does not fit all. Hopefully if proved this will lead to changes.

    Reply
  16. Emma6

    I’m still a week away from my next jab, and even after I have persuaded the surgery to do 11 weeks, not twelve, I am already rantingly angry, suffering insomnia and sobbingly tearful. I need to persuade them to get me down to 10 weeks, if not 9. Hopefully this article may help persuade them. But hurry up with publishing the results, people, I need more ammunition! Seriously, thanks for all you are doing.

    Reply
  17. Dave Jones

    Very encouraging news. I’m still battling against the absurd 12 week rule. I self inject every four weeks but even that is often not enough. By 12 weeks my first tell tale symptom, appalling stomach cramps, are starting to take hold so I double up at 12 weeks supplementing my ‘free’ shot’ with an additional loading dose. I have to bear the cost myself. It shouldn’t have to be like this.

    Reply
  18. Martin

    Really positive and encouraging news. I have been privatly injecting between my revised 10 week treatment period this year. I Feel so much happier and more alert. Will be trying to convince my sceptical GP of providing increased treatment at the end of the year. Pity the NHS fail to realise that many people are willing to pay for this extra treatment

    Reply
  19. jeanette johnson

    I am literally suicidal with this anaemia type.
    if there is a God. please please let me have my injections every 8 weeks.
    I changed my surgery, they cut me back to every 12 weeks, the answer :that is nhs guidelines.

    Reply
  20. Rosemary Sandham

    I self inject every 2 weeks, which my GP thinks is ‘quite a lot’, but she only supplies me with 1 a month, I buy mine from Southern Spain when on holiday, 5 vials for 2.28Euros, and all-in-one needles and syringes for 0.80Euros each, so they’re not expensive in Europe, why here? I took part in these tests and am delighted at this news. Roll on more info.

    Reply
    • Jill Liston

      You can get 100 syringes for €2.60 and 100 needles for €2.45 from Medisave. They supply to NHS.

      Reply
  21. Lesley

    Great news. Well done PAS.

    Reply
  22. Sarah Murray

    Such encouraging news! One month after last injection and I’m already on the downward spiral!
    Faced with disdain and point blank refusal when asked for more frequent injections. Feel like I’m banging my head against a brick wall; and very concerned about what the future holds! Nerve damage to name but one! My mum can barely walk at 63 and is on crutches now (diagnosed at 44) as have I been.
    The most debilitating and misunderstood, misdiagnosed disease!!

    Reply
  23. Janet C Crocker

    I have been receiving shots from my medical insurance to self inject 1 mg per month. I do notice an increase in symptoms at the 3rd week. My supplies are provided by Kaiser in California. My sisters take the oral pill and dissolve it in their mouth. They feel it works for them. I do not trust the oral dosage so will remain on the shots.

    It astounds me that they would baulk at a more frequent dosage. Isn’t B12 water soluable and doesn’t it leave the body in urine if not used?

    Reply
  24. Zani

    I think I am known as the loony lady who just pops in whenever I feel like it to have a B12 shot.Not as if it is hard core drugs & I do supply my own ampoules.
    Docs did not want to ok it but I just kept turning up to see the nurse & now I just walk in & smile when asked if I am there for my shot.
    I shake my head yes & take a seat.
    It is such a misunderstood disease with fatal outcomes if not treated properly.
    My father has been self injecting for as long as I can remember but at the time I did not know it was for PA.But now all the pennies dropped & I realized what he was doing,saving his life (now 83)
    So I will continue to front up when I feel the need,sometimes weekly,but I could use more!!!

    Reply
  25. Christine King

    I have just become a member of PAS and am so grateful for all the wonderful help this society offers! Thank you for the research and support. I get injections every 11 weeks, that’s the most my surgery offered when I asked if I could have more frequent shots. Am looking into self-injecting, I am so exhausted and have to take matters into my own hands

    Reply

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