B12 frequency

[Orchard33]

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.

[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 in reply to Libuse]

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 in reply to Orchard33]

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 in reply to Libuse]

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

[wedgewood in reply to Orchard33]

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 in reply to wedgewood]

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]

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 in reply to Sailinglady]

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]

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 in reply to ReallyWondering]

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