When to switch from EOD to weekly or ... - Pernicious Anaemi...

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When to switch from EOD to weekly or twice weekly?

RisingOne profile image
13 Replies

Hi Family, this site has been more helpful than my GP and anyone else! Thank you all..

I’ve been injecting 1ml methylcobalamin EOD, for 3 months, the days that I inject and the days that I don’t inject my symptoms are about the same, numbness in hands, arm, some in legs, weak muscles.

Should I try weekly or twice a week, ( taking to much) symptoms are not getting worse, just no real improvement?

In all I have been injecting since Nov 2021, but in the early days my GP nor I did not know what we were doing. I was weekly, daily, monthly, 1ml, 0.5 ml, 0.3 ml. all over the place. My GP, also has the 1ml, cynocabalim

After, discovering this site, I became more consistent and disciplined, all tests including Homocystein, Vit D, Folate have all been within range, of course B12 is high due to injecting.

PA due to GERD medication for awhile.

Thank you guys for all your help and patience.❤️

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RisingOne
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13 Replies
jade_s profile image
jade_s

It might be useful to stay on EOD a while longer. It's not unheard of to hit plateaus, where it seems like nothing is changing, until one day it does. Especially if you still have numbness, it might be too soon to try. Just my 2 cents :) I hit quite a few plateaus along the way. I think the longest stretch of zero change was about 6 months!

When you do want to reduce, it's good to go slowly, for example increase by just 1 day at a time (so every 3 days) and hold for, say, a month or so. Then increase by another day (every 4 days), and so on. If you track symptoms, it'll be obvious when you hit your (current) limit.

RisingOne profile image
RisingOne in reply tojade_s

Thank you, JADE_S, for such a helpful answer! I really appreciate it, I get so frustrated! Thank you, this sight and helpful folks like you and much prayer as helped me get through this ordeal. God Bless You..Jade_S.

wedgewood profile image
wedgewood

As your B12 deficiency symptoms are due to years of taking PPIs ( really irresponsible of your GP to prescribe them for so long .,They should only be taken for a short time . The stomach acid was annihilated by the PPIs -Stomach acid is needed to absorb b12 and other vitamins and minerals) ) it will take a long time to get rid of those symptoms . It is important to keep injecting , but don’t worry , you cannot overdose on B12 . jade_s has given you good advice Keep up the good work . It’s excellent that Homocysteine, vitamin D . and folate are in range . Best wishes .

RisingOne profile image
RisingOne in reply towedgewood

Thank YOU Wedgewood, for your info and time.

deniseinmilden profile image
deniseinmilden

Excellent replies so far.

If you can, it might be better to swap to hydroxocobalamin instead of the methycobalamin, because you can get some negative effects from the methyl group if you don't need it. (It's essential if you need, but few people do).

Don't worry about trying to cut down on B12 jabs until you feel you are completely OK and you are sure they are being done in excess of your requirements - the B12 is completely safe and if you need it, you need it.

It's better to look for other reasons why your improvements have slowed and see if you can get them going again. The processes that use B12 use a whole range of vitamins and minerals so make sure you have plenty of all of them - if only one thing is in short supply it will be the "limiting factor" to any additional progress.

Once you actually get better, your B12 requirements for energy are likely to go up as you become more active, balancing out the reduced requirements for repair so you need to keep your levels up for a lot longer than you think.

Sometimes the body is using it for repairs to parts of your body that you are less aware of - it changes the priorities as one bit gets to a 7/10 level, it changes to something else that's only 6/10.

You wonder why you are left at only a 7/10 improvement to say your nerves in your fingers, but it's working on something like the nerves in your stomach or brain that you don't feel so much and getting them up to speed. Once everything is at 7/10 level, the 8/10 improvements round will start and so, in say 3 months time, you might find your fingers start to improve again! And so on.

I've been doing daily jabs for 7 years and only decreased my frequency for a short time last spring while I was in hospital and therefore not doing much and so felt needed less. Once I was up and going again I needed my jabs daily again.

It can take at least 18 months under optimum conditions to completely heal nerves and anything that sets this back (a minor deficiency of anything for instance) makes this time scale longer so be patient and don't loose heart!

Keep going! Some people have been injecting daily for decades to good effect.

RisingOne profile image
RisingOne in reply todeniseinmilden

Thank YOU, Deniseinmilden, for such a compete and through answer.

jade_s profile image
jade_s in reply todeniseinmilden

Very well explained, thank you Denise! :)

deniseinmilden profile image
deniseinmilden in reply tojade_s

Wow - that's a double compliment coming from you, who writes so eloquently. Thank you!

jade_s profile image
jade_s in reply todeniseinmilden

Likewise my dear! ☺️ I hope you are doing ok these days.

jade_s profile image
jade_s

Something else to consider, even if folate is in range, you might try adding folic acid anyway. I went along for almost a year taking just 400mcg per day and levels were fine. But I had plateaud symptoms-wise. I trialed taking 5 mg and it really helped, and I still need to take it. Not everyone needs that much and some react adversely to high doses, and in most countries that dose is by prescription, but it can still be worth trialing to see if taking some folic acid helps. I started with 800mcg tablets and slowly increased.

VellBlue profile image
VellBlue in reply tojade_s

yes, worth checking whether other vitamins and minerals help. I found I really needed magnesium at one point.

Be careful as you can take too much of some vitamins and minerals which can be dangerous, not everything is safe like B12.

If possible it's best to make sure you are eating very healthily, with plenty of green leaves, berries and wholegrains, so you are getting sufficient of all the micronutrients. Then you may need fewer supplements.

deniseinmilden profile image
deniseinmilden in reply tojade_s

The same with me only I needed lots of methylfolate to balance the hydroxocobalamin. Folic acid is good stuff!

eclilley profile image
eclilley

are you getting plenty of folate, potassium (especially) & iron alongside?

Upping intake of these definitely helped smooth some thimgs out a bit.

I found EoD just a bit much for me, so then opted for 2 x week. Now I am mot very good at staying disciplined and it's usually weekly, sometimes 2 x week esp if I notice some specific symptoms

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