I was on a ‘Downer’ (but not for long)

by | Feb 2, 2016 | 3 comments

It was all going too smoothly.  Everything was starting to slot into place regarding the problems with treating Pernicious Anaemia and there is now substantial evidence that the reason why some patients need much more frequent replacement therapy B12 than others is all down to genetic mutations in the cell receptors.  The science is there, but has yet to be applied to the practical problem of identifying patients’ individual needs.  That was why I travelled to Manchester on Friday (four hours by train each way – cramped, noisy trains without any charging facilities for my laptop – I mean, 2016 and all that) to meet with a clinical researcher who has done some work in this area.

As I said, the scientific basis for individual treatment plans is now established, or at least could be used to explain why many patients need more frequent injections than others.  This in itself is a recent development and my meetings with several academics at the end of last year were extremely positive and encouraging.  And then there was the meeting on Friday where I was hit with an unexpected problem.  Because the diagnostic tests used to determine any absorption problem are so unreliable, it will be almost impossible to recruit significant numbers of patients to take part in any in-depth study.  As was pointed out to me, just because a person tests positive for the intrinsic factor antibody doesn’t mean that he or she will have Pernicious Anaemia – it could be a false positive.  And where does that leave us with all the thousands of people who test negative.  And what about those whose deficiency is due to some other issues such as medicines, or dietary intolerance.  It’s a huge problem because any recruited cohort would have to be positively and unconditionally suffering from Autoimmune Metaplastic Atrophic Gastritis – and unfortunately there are other reasons apart from Intrinsic Factor Antibodies that can cause AMAG.

So what do I do now?  I arrange a meeting between all of the interested parties and invite them to discuss how to get around this problem.  And while they discuss this, I’ll pour the tea (and coffee) in the hope that the beverages will help to provide a solution to the problem.  More on this later….. probably later in the year.

Now you may be wondering why there is a picture of somebody’s toes on here – well it’s simply that I made the deadline for a piece in a national magazine for podiatrists which has been accepted and will appear in the March edition of the magazine.  Did you know that Podiatrists are able to prescribe B12 injections?  Me neither….now there’s a possibility for progress.

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3 Comments

3 Comments

  1. Jo

    Thank you for this I was diagonsed as B12 deficient but when tested I have the intrinsic factor so I do not have PA. However on follow ups with my Doctor he explained my treatment would be the same with B12 injections and happy for me to have them every two weeks as my neurological and physical symptoms would return if left for 3 weeks and longer. This article is so important as I have a Vitsmin D deficiency as well and take all the recommended supplements such as folate to assist my process of B12. I have fought for this and I would have gone down the self injecting route if this hadn’t happened. It is amazing that as everyone is considered an individual why they cannot see this fatal illness affects everyone in so many different but similar ways and therefore should be treated as such. I know how lucky I am but why should I feel lucky and grateful. I pay for my prescription I feel so passionate that PA and B12 sufferers should be treated to our simple injections as and when we need it rather that made to feel like addicts for a drug that is life saving.

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  2. Mabsie

    Hmmm, shame to find that out. I know that PA runs in my family going back 3 generations. I can’t say AMAG now can I. I’m now a bit confused. Is it possible that in some families it is genetic. I’m sorry I’m so ignorant. Thank you for doing that horrible long journey on everyone’s behalf only to get disappointed. Still something new was learned with regard to podiatrists!

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  3. D

    I will be following this with great interest, and am so grateful to you for your work!

    I have never been diagnosed with PA, but have suffered for years with severe b12 deficiency (with neurological and psychiatric symptoms showing up around 400 pg/ml!). It has been put down to some sort of malabsorption syndrome.

    Even with weekly injections for several months my relief only lasts a few hours and symptoms return rapidly. I can not seem to get enough b12. It is confusing to say the least. I feel like I am missing pieces of the puzzle.

    My parents and twin sister respond quite well to a bit of b12; I seem to be the odd one out. It is very hard to get my doctors to understand just how rapidly symptoms reappear.

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