B12 dose and frequency question - Pernicious Anaemi...

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B12 dose and frequency question

Greena51 profile image
13 Replies

Hi all,

I have been self-injecting 1mL of hydroxycobalamin for about five months. At first every 10 days, but cut down to every 7 days based on my symptoms. Symptoms (floaters in vision, fatigue, brain fog) are still kicking in on about day 6 and I am wondering if anyone has experimented with injecting 0.5 mL twice weekly instead of 1 mL once weekly. If so, has this dosing improved symptoms? I know there is a lot going on kinetically in terms of the serum levels of B12, tissue levels of B12, and rate of excretion. But my simplified model is that a smaller dose of B12 given more frequently would keep tissue levels topped off before B12 is excreted.

Thanks!

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Greena51
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13 Replies
fbirder profile image
fbirder

I wouldn't do it.

Yes, in theory it should be better to inject 500 mcg twice a week, rather than 1000 mcg once a week. However, there is the problem of storing the second half of the dose without letting bacteria grow in it.

I had a very similar problem. I now inject 1000 mcg twice a week (Mondays and Thursdays).

Greena51 profile image
Greena51 in reply to fbirder

Thank you for the feedback. I am trying to strategize to get more out of my prescribed vials until I can find a GP who is willing to prescribe enough doses to treat my symptoms. I hadn't thought about the bacteria issues.

deniseinmilden profile image
deniseinmilden

It might be worth trying if you don't mind throwing away what you don't use - always start with a fresh ampoule - but I wonder why you are trying to cut down? If you need it, you need it.

Symptoms are your body's way of telling you that something is wrong so if you are getting symptoms then you are going into deficiency every week and will be needing to repair damaged cells each time. This uses more resources and you are likely to have an elevated homocysteine level which is bad for you.

If you get symptoms after 144 hours (6 days x 24 hours) then try another jab at a convenient time before that every cycle.

In time, if you always jab before your symptoms kick in you will become more well and won't have the need for repeated extra repair. Only then you could you possibly reduce your frequency of jabs a bit but try to stay within a time frame that stops you from getting symptoms.

For example I need to inject 1ml about every 18 - 20 hours which is a pain for timing so I use 1.5mg in 1ml ampoules meaning I'm covered for about 28 hours, to keep my symptoms away. I then chose to inject roughly every 24 hours (when I get up) so that I stay as well as possible and have a bit of flexibility in case I'm up early or late.

If your symptoms come back every 6 days then you probably should be be doing your jabs every 6 days at least!

You may well benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron from your diet.

Inexpensive supermarket A-Z supplements are as good as, and often better than, dearer branded ones.

Keep as well as possible - one life: live it!

Greena51 profile image
Greena51 in reply to deniseinmilden

Thanks for the feedback. I am trying to get more out of my prescription. My GP would prescribe only six months worth for every 10 days. I am in search of a new GP and have decided to increase the frequency anyway in hopes that my new doctor will listen. Ideally, I would continue to track my symptoms and inject every 5 or 6 days to remain well.

I've also started on the multivitamin about three weeks ago after evaluating my diet and realizing that I fall short of the RDA for folic acid, iron and other minerals.

deniseinmilden profile image
deniseinmilden in reply to Greena51

I find it cheaper and easier to buy mine online and get it delivered to my door than having to phone the Drs for the repeats and travelling to the pharmacy to collect it - and on top I had to pay a prescription charge!

Even my extra strength ampoules delivered are only about 80p each and I know the 1mg ones are less.

And no-one is screwing the life out of you any more - which is what it feels like to be at the mercy of the Drs! Grrrrr! 😁

Statesideheather profile image
Statesideheather

I was thinking the same as you. Why not use a smaller dose more often? I use multi use vials so its easy for me to experiment. It took me several months to pin down how often i need to inject. I found that my peak is about 24 hours after injection. By 48 hours after injection (1ml) i start being very aware of symptoms.

Last week i tried a 500mcg. It did not last me the 2 days. Of course that is only one attempt and there are many factors. Ill probably try again sometime but it seems like in my case it take the full mg to get enough for a few days.

Greena51 profile image
Greena51

Thanks! Multi-use vials are something to consider for me. I am trying to stretch out the doses I have while I search for a GP who is a better listener. It may work best to stick with the full dose, but I would be interested in hearing more of your experiences with the doses and timing. It is not always easy tracking symptoms when there are so many additional factors for feeling well. In my case, I do more when I feel well and seem to need more as a result.

fbirder profile image
fbirder in reply to Greena51

Yes, I couldn't track some of my symptoms that accurately. They just don't swing that much.

With one injection a fortnight I noticed a definite increase in fatigue after 9 to 12 days. It was that variable - not exactly 10 days as some people report.

I switched to once injection a week and the fatigue levelled out. No more peaks and troughs. Then somebody close to me told me that my moods seemed a lot better the days after my injection. It took another few weeks, and some difficult self-analysis, before I realised that my irritability and paranoia were, indeed, worse towards the end of the week.

That's when I switched to twice a week. Apparently I'm a lot easier to live with on that regimen, although I don't really feel that different. But without outside feedback I wouldn't have noticed.

Greena51 profile image
Greena51 in reply to fbirder

Thank you; your reply here made me chuckle. My husband occasionally gently suggests that I mark "irritability" on my symptom tracker. One symptom that I've started tracking that seems easier to follow are the floaters in my right eye. (I had a retinal detachment last summer and have more floaters than usual since then.) That symptom pops up before I notice fatigue. Brain fog is difficult to track as well - it's more noticeable when I am typing and forget how to spell or calculate numbers wrong while lecturing. But if I'm watching TV or cleaning my house, it doesn't come up. The floaters are there no matter what I am doing. I recommend the Symple app for tracking because it's on my phone.

fbirder profile image
fbirder in reply to Greena51

Interesting that your floaters change. I've had them quite bad since I had concussion in my late teens, but I've never really noticed them changing.

I use Excel for my symptom tracking, because I'm used to it.

Ryaan profile image
Ryaan

I agree with deniseinmilden.

If your symptoms are returning every 6 days you’re better off injecting 1ml every 5 days, simply because you need it.

Over time you may be able to reduce the frequency of your injections.

I have experienced that.

Saying that I had some spare packs of Hydroxocobalamin 1ml ampules from the German Versandapo online site. (10 x 1ml ampules in 1 pack)

I offered to give them away because I ordered more than I needed and most have gone. I think I have 1 or 2 packs left if you would like to have them if you’re in UK.

They are dated until end of 07/2019.

I you google Versandapo and in search box type B12 depot.....you will see Rotoxmedica make Hydroxocobalamin 1ml x 10 ampules. Those are what I have.

Greena51 profile image
Greena51 in reply to Ryaan

Thanks so much for the offer, but I am in the US. I think I have enough to go every 5-6 days until my appointment with the new doctor. If things don’t work out with him I’ll seek online sources.

Statesideheather profile image
Statesideheather

Multi dose vials aren't ampoules. They are designed to be used many times. Of course there are always risks so using proper technique is important. It's also important to know how many doses you will need at what interval because once the seal is breached, it should be used within 28 days. My doctor gave good tips on storage and avoiding contamination so it would be good to ask a nurse or physician to be sure it's done properly.

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