Periodic need for more B12

[Baggy8]

I'd appreciate knowing your experiences about periodically recognising the need to up your B12 injections? My journey has lasted some years and after the initial disasters with GPs dismissing me and becoming very ill, I started to SI. Eventually I found that fortnightly jabs worked brilliantly for me. However, about 6 months ago it became clear I needed more, and went to injecting weekly. I'm now starting to see my early warning signs again at an earlier stage, and anticipate having to move to a 3 day routine.

I'd love to hear what you've experienced or if anyone knows of any research studying this.

Many thanks ☺️

[Jillymo]

I find at times I need to inject more often too.

I can only assume that its because our antibodies wax & wane. If I have a flare up of one of my other illnesses I can rapidly go down hill unless I step the B12 injections up.

I have not found any studies as to why !

[DiSews]

My diagnosis was only a year ago, and only started SI in November, but my experience is that illness ( who gets mono in their 50s?) or stress (every visit to the GP) or increased activity ( babysitting grandchildren) requires more frequent injections. Also that it is better to anticipate if possible than play catch-up after to event. To be honest, I don't know yet what will 'normally' work for me! Currently EOD or daily until I find some stability. What a challenge this disease is!!!

[Baggy8 in reply to DiSews]

Yes, there is a higher need as you initially repair. Also, once I'd got my dosage right it was always a matter of monitoring myself and being aware of what would, short term, up my need. But mindful of this, with no reason why, I've recognised that my body's general maintenance requirement - notwithstanding 'events' or illness - has risen.

[Suzibelle]

Me too, Baggy8. 11 years ago I started on the normal post-loading regime of 1 every 3 months, which was hopeless; moved to ever 2nd month then every 7 weeks, which was okay for a while. Then every 6 weeks, also okay for a while, then once a month, at which point I went to SI every month because of interference from a new GP at the practice who was adamant I could only have them every 2 months, despite my actual GP being more than happy to let me experiment to see what was the best fit. I stayed at once a month for a few years but lately have gone to every 2nd or 3rd week, depending on how rubbish I'm feeling.

I don't know if it's the aging process, changing hormones during/post menopause or what but something's happening. I have wondered occasionally if the condition is actually progressive - i.e. gets worse with time - for all I haven't found any mention of that in the research I've done.

But then there are so many variables that we might as well just go with the flow of how we feel!

[Wwwdot]

Hi Baggy8

Great post and in my experience needing to inject more frequently is a GOOD sign.

I was diagnosed with PA in October 2022 and I have been self- treating since December 2022. IF I had followed my GP B12 offering I would have had 10 B12 injections since then. But I think I would be virtually dead or at least severely non-functioning. I now inject 4 times a day and watching cofactors and I am amazed at the progress I am making.

Three months ago I revisited "What you need to know about PERNICIOUS ANAEMIA AND B12 DEFICIENCY" by our wonderful Martyn Hooper. The following paragraph on page 143 struck a cord in relation to frequency of self-treatment:

"In other words, the patients who were given large doses initially needed large doses for maintenance, while those who were started off on small doses only needed small doses in the future. Now why could that be? Often when modern-day patients ask for more frequent injections they are told that 'the more you receive the more you want' which, as far as I've [Martyn Hooper] been able to discover is based on no scientific evidence, but is a way of telling the patient that he or she is imagining that they need more injections. But the 1958 paper was not based on patient's feeling of wellbeing but instead on close inspection of the patient's blood. And patients who were given large doses initially needed large doses for maintenance, not to feel well, but to prevent their blood deteriorating. Why this was the case is not explained by the researchers and I [Martyn Hooper] haven't been able to find any papers that re-examine this phenomenon." Note my (wwwdot) addition in [].

(The 1958 paper is Darby WJ, Bridgeforth EB, Le Brocquy J, Clark SL Jr, De Oliveira JD, Kevany J, McGanity WJ, Perez C. Vitamin B12 requirements of adult man. American Journal of Medicine 1958; 25(5):726-732)

This certainly puts discussions and experimentation with frequency of injections into context.

🤗🤗🤗

[Baggy8 in reply to Wwwdot]

Thanks for that! I've got his books. Very interesting, I'll dig them out, maybe a few more interesting nuggets