B12 frequency: I've SI EOD for just... - Pernicious Anaemi...

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B12 frequency

Orchard33 profile image
10 Replies

I've SI EOD for just over a year. I know that some on this forum may have decreased their frequency after a period of time. I'd like to try decreasing so any suggestions would be gratefully received.

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Orchard33
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10 Replies
Libuse profile image
Libuse

I can empathasise if not help. I have been SI EOD for 2 years now and wonder about decreasing but I still have peripheral neuroma and have read it can years to improve….. Same age as you by the way 😊

Orchard33 profile image
Orchard33 in reply toLibuse

Thanks, Libuse. Yes, I think age is a factor. I've also read three years to some kind of recovery. I'm assuming on EOD not the NHS ration. So, by that measure I have two more years, probably on EOD. That desire to be well again without dependency on B12 shots keeps getting the better of me. .

Libuse profile image
Libuse in reply toOrchard33

Have you had thyroid checked? I was horrified to discover that I was severely hypothyroid after collapsing with vertigo, later discovering that the two often go hand in hand….

Orchard33 profile image
Orchard33 in reply toLibuse

I have had thyroid tests relatively recently which were normal. Not that I trust tests that much! Thanks for the thought.

wedgewood profile image
wedgewood in reply toOrchard33

If you have Pernicious Anaemia, I’m afraid that you will always be dependent on B12 injections. But you will likely eventually be able to inject less than you do presently . Best wishes .

Orchard33 profile image
Orchard33 in reply towedgewood

Thanks Wedgewood for what you say about likely being able to use less than I do presently. I'm trying to get some idea of how long that may take but I'm sure it's Luke asking how long is a piece of string!

Sailinglady profile image
Sailinglady

I've tried reducing on and off over the last couple of years. At no point has it gone well, but that's not a reason not to try. My advice would be to make a list of all the symptoms which have resolved/reduced with regular B12, so you have an idea what you are looking for when they return), some caught me unaware e.g. low back pain and a crampy muscle in my jaw.

Then, reduce to twice a week. Do that for maybe 4 weeks. If all is ok, then reduce to weekly. Do that for another 4 to 8 weeks. You get the picture. Or, if you want to be even more cautious, reduce to every 3 days, then every 4 days etc.

I've tried it both ways, but come to the conclusion that i still need eod at present. Or perhaps, i just need to increase back to eod when I'm ill, then reduce again. I'm still working that bit out.

Orchard33 profile image
Orchard33 in reply toSailinglady

Thanks, sailinglady. I've been experimenting and come to a similar point. I'll take the very gradual course and take it a day at a time. Separating dosage from life events and their effects is not easy to factor in. I'll suck it and see.

ReallyWondering profile image
ReallyWondering

I was able to go from EOD (only for two weeks) to every 5-7 days, reducing gradually. While I still have some minor "vibrating" in my feet, all other symptoms seem to have faded in the last 6 months, since I started.

Orchard33 profile image
Orchard33 in reply toReallyWondering

Thanks very much for sharing your experience of reduction. Very useful.

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