Last week I had an extremely interesting meeting with one of our members who is a Pharmacist and Evidence-based-definitionhas offered to help us in any way that she can.  She has been digging around and has found that when Hydroxocobalamin was first licensed for use in the UK the dosing instructions were much more flexible than stated by the British National Formulary – and note I say flexible and not more frequent.  Anyway I told her of my meeting over a year ago with the editor of the BNF who had told me that if I can provide evidence that some doctors are prescribing more frequent injections than stated in the book then she would consider re-wording the instructions.

And so that’s why we are going to conduct another survey of our members that will ask if their GP or other medical professional prescribes more frequent injections than one every three months.  There are a number of problems that will have to be tackled.  Firstly members will need to be reassured that they and their doctor will remain anonymous and this is because patients whose doctor departs from the guidelines are very keen that he or she won’t get into any sort of trouble.  Secondly there is the issue of only collecting data from patients who are prescribed more frequent injections.  Because self-treatment with B12 bought from all manner of places is now so widespread we have to ensure that we collect information from prescribed treatment only.

The idea of all of this is to put before the BNF a reasonable and evidence based case for a thorough revision of the guidelines set out in the little book.  And it is only be putting a reasoned and evidence based case will we stand a chance of getting the guidelines changed.  I’m sure that between us we can assemble a dossier of evidence by the summer.  Please watch out for the new survey on the website.

 

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3 Comments

3 Comments

  1. Tanya O'Doherty

    Hi, i was on 12 weeks for years and then after suffering a stroke in 2011, my Dr provided 8 weeks. After still suffering she would not change to six weeks until I had another neuro episode and my neurologist sent a letter to say give it to me at 6 weeks. I am still struggling.

    Hope this helps

    Kind regards
    Tanya

    Reply
  2. Lyn Harrington

    I have been having my B12 injectios every 4 weeks for the past 12 months as prescribed by haemotoligist. I did trial fortnightly injections agreed to by my gp, to see if my symptoms did actually ease, and they did! We are currently awaiting clarification from manufaturers as to any side effects with having injections more frequently on a long term basis.
    Im hoping to hear from my gp this week as to my going back to fortnightly injections. It was haemotology that requested this info, and said that if it comes back as zero or very little effects then I can have them that often.

    Reply
  3. Siobhan Ellis

    I was diagnosed in 2003 had loading doses over two weeks then went on to every 3 months. I was unable to walk without holding on to something, unable to think or do almost anything. I had to see a consultant regarding an endoscopy and colonoscopy. She spoke with me about my PA and said I could have injections more often if I needed them. I had to get her to write to my GP or my doctor would not allow me to have them more often. She said she was following guidelinest. I then had my injection every 8 weeks. Sometime after that I had to change GP Surgery,as we had moved area. I mentioned that I was not lasting for the 8 weeks and that other people had noticed I would go down hill. Tired walking slower etc etc. This GP said if I needed injections more often then I should have them more often. Since then I have my injection every 4 weeks. They don’t always last, but I do have a more normal life now. It depends on how much I do. It is not my old life but it is a life. Which I did not have for several years. I don’t think I will ever be the same as I was before all of this, PA, under active thyroid and several other illnesses that go with autoimmune diseases. I do believe had I been treated correctly in the first place I could have made a full recovery and not had to take early retirement and be on antidepressants and so many other tablets. They hand out antidepressants without a blood test yet they will not give you a cheap lifesaver. B12 injections.

    Reply

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