all good for now

[Hedgehogs15]

afternoon everyone. I went to the nurse yesterday morning and had my yearly bloods taken, then had my B12 injection. I managed to get them in this order.

I saw nice nurse so no questions asked about frequency but next month if my B12 is showing ok it will be a fight again to stick to 3/4 weekly especially if it’s the nurse that tells everyone we should all be every 12 weeks. I new I was ready because of sore tongue,cracked side of lip, unsteady feet and tingling hands. Just thought I’d let you know that like the rest of you with PA it’s an uphill battle to keep going. Oh and on top of this I’ve got cellulitis in my left leg and just started strong antibiotics. Sending best wishes to all and hope you all have the best days you can x

[Nackapan]

Good a nice nurse . May your 3-4 weeks b12 injections continue as they should.

T c

[Hedgehogs15 in reply to Nackapan]

thank you Nackapan and for looking after us all x

[wedgewood]

Why not consider self-injecting ? So many of us do . It’s easy and cheap ( about £1.60 for everything ) If you want details , just say .

[Hedgehogs15 in reply to wedgewood]

thank you Wedgwood that’s a real option if the nurse starts being difficult again. I know I can come here for advice on how to self inject. Thank you

[Cherylclaire Forum Support]

Sorry to hear that, Hedgehogs15 - be aware that some antibiotics can deplete your B12. Don't want you to have another problem to cope with. It sometimes starts to sound like a sick joke, this, doesn't it ?

I remember clearly when pleading for more frequent injections, a locum GP at the surgery saw me (directly after I'd had my B12 injection from the nurse) and sent me straight to the local hospital to have B12 tested, telling me it would make no difference ! I didn't know enough then to protest, and these things go on your record and get quoted back to you, don't they ?

If you have been diagnosed with PA, then your B12 injections are supposed to be for life, since there is no cure. You are likely to have had a positive IFAb test at some stage. After that, there is no reason to test B12 or test for intrinsic factor antibodies ever again !

I have had three IFAb tests - but never had a positive result.

If there is no cure for PA, then the B12 is given to ensure that your B12 deficiency symptoms are controlled. Not always possible to get rid of all of them completely, but surely the aim of the medical profession (including that nurse) would be to try for that ?

Why would one injection every three months be the correct dose to ensure that happens for thousands of people of all ages and nationalities, all presenting with a variety of symptoms of differing severities and frequencies ? It is not possible.

Don't know about you, but I'm not even the same two weeks running !

So, for a start-off, the NICE guidelines have advised, since 2014, that injections should be every 2-3 months. They are also in the process of reviewing their guidance regarding B12 which will be ready in 2023.

The DNA specialists who look into genetic reasons for being unable to access B12 easily at cell/tissue level will advise B12 injections be given twice a week if they find that evidence.

That makes the nurse you spoke of wrong. Luckily, injection frequency is not within her remit - it is decided by the GP. That GP can follow guidelines and advice - or can work with the patient in front of her/him, and decide on a frequency that actually works !

[Hedgehogs15 in reply to Cherylclaire]

thank you so much Cherylclaire for taking time to write such a lengthy explanation for me. I have taken it all on board . I agree I am never the same two weeks running and life is really hard work sometimes.

Why this thing where 2-3 months is enough is obviously written by people who have never studied enough what effect being short of B12 can do to our bodies.

I really thank you again and wish you well for the future. Xx

[Cherylclaire Forum Support in reply to Hedgehogs15]

It does not even sound right, does it ?

I'm not sure that there is any established reason for the frequency decision. It has been lengthened three times over the decades. I'm almost sure that it was Tracey Witty who tried to trace the logic of this (on the grounds that this decision must have been based on something)- and she wrote about this circular journey for the truth in a blog.

Well worth reading.

[Hedgehogs15 in reply to Cherylclaire]

thank you for taking time to reply again.

I think if the dreadful nurse reappears again I might try to self inject. I know so many kind people here will talk me through it. I wish you all the very best x