B12 Injections: Just finished self... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

B12 Injections

Flatfred profile image
13 Replies

Just finished self injecting B12....every other day for 2 weeks. Feeling so much better but now need to know how often for a maintenance dose as I read conflicting advice ranging from weekly to monthly to every 3 months.

Any advice gratefully received.

Written by
Flatfred profile image
Flatfred
To view profiles and participate in discussions please or .
Read more about...
13 Replies

Hi,

It depends on what type of B12 you are using, if you have neurological problems (damage) and if you are injecting IM or sub cutain, assuming IM then: cyanocobalamin has as standard monthly maintenance doses, hydroxocobalamin in UK 3 monthly maintenance (but if you have neurological problems BNF advises every other day until no more improvement, then to 2v monthly maintenance) in other EU countries maintenance of hydroxocobalamin is often 2 monthly, or even monthly, methylcobalamin is again different. All need other B vitamins to be metabolised so its good to take a multi vitamin, and have some monitoring to make sure you do not deplete of folate and or iron during intensive B12 treatment. Also a drop of potassium is possible during initial aggressive treatment of B12.

You can find (translated) patients info leaflets that a come with the B12 product on line, just put your specific make in google search.

I hope this helps,

Kind regards,

Marre.

Mrs_Somerset profile image
Mrs_Somerset in reply to

I agree with Marre,

Also - you can find dosage info etc on the pernicious anemia website, their facebook bage or the rather helpful and user freindly B12D website - I trust and reccomend those sources.

As you have found - the internet is full of conflicting advice, mainly because anyone can post stuff there, so best to use tried and trusted sources.

best of luck and so glad to hear you are feeling an improvement - yey!!! :-)

Big Hugs,

M

engels profile image
engels

I wouldn't pay any attention to recommended injection intervals in manufacturers' information. That information is based on the accepted protocol for the country in which the product is being sold and, certainly in the case of the UK 3 monthy interval, appears not to be based on any scientific research. You need to work out an injection frequency that suits you which will involve some trial and error. You don't say what symptoms you had or whether you are now free of symptoms. If you are not free of symptoms then I would continue injecting every other day until you are and then gradually increase the gap between injections. The most important thing is to ensure that you always have an injection before any symptoms return. If you don't do that then you will end up on the rollercoaster of ups and downs that many of us have experienced when limited to the treatment prescribed by our doctors.

For what it's worth, I have found that an intramuscular hydroxo injection every 2 weeks works well for me.

Gambit62 profile image
Gambit62Administrator in reply toengels

agree with Engels - it's going to be a bit of try it and see - listen to your body is the main thing - if you feel the symptoms coming back then that is the time to go for another shot.

B12 isn't a vitamin that you can overdose on.

Unfortunately there isn't a straight forward answer as people respond differently.

Although hydroxocobalamin does seem to be retained longer on average than cyanocobalamin that is an average and the study that showed it up also said quite clear that there was a lot of variation and in some cases cyanocobalamin may be retained longer than hydroxocobalamin.

As Marre says - important to balance with other vitamins - B6 and B9. you can overdose on B6 so that's one to be careful of. B9 helps you metabolise the B12 and B6 and B9 tend to work in tandem and a deficiency in one will lead to the body metabolising, eg B6 into B9 or vice-versa.

I use a nasal spray at about 2.5-3 times the dosage on the spray and that works for me as a supplement - don't necessarily notice much from the injections and think from my last experience that I probably won't ease off on the spray after the injections - ability to cope with stress seems to get compromised.

cocoamom profile image
cocoamom

Hi. I had bariatric surgery. 12 years ago it ruined my life. I have neuropathy mostly at night all over my body. I don't know where it is coming from I feel like I'm being stung by thousands of bees. I can't afford the b 12. ABD can't get the. Dr Wil only give it to me once a month my level is hi what do I do help. Could it be a different deficiency help can anyone who had bariatric surgery reply if anyone wants to write me I'm at kal 70702@gmail.com

puncturedbicycle profile image
puncturedbicycle in reply tococoamom

Hi. I have sent you a pm.

Hi cocoamom,

It is very possible that you may hasve multiple deficiencies playing a part. I'm sorry to read you can not afford more B12, its not expensive (compared to most other drugs) , but perhaps you could try a goode multivitamin?

I did give you a link to multiple vit def as a result from that kind of surgery in this post:

healthunlocked.com/pasoc/po.... I know some one who has had a gastric band fitted, she is OK though, can not eat things like cheese though, suffers from dumping syndrome, but she is OK for the rest.

Kind regards,

marre.

Flatfred profile image
Flatfred

Thanks to Marre and everyone else for the words of advice and support. Sorry for slow response, I've been away for the weekend...swimming in a field lol.

I've been taking B12 in the form of Hydroxo and injecting IM.

I've had so many problems since taking some dodgey Levo (I've had a TT) that I don't even know for sure if some of the symtoms I've had have been B12 related but my last bloods showed I was in the lower 1/3 in range and all advice for 'hypo's' is to aim for the top end.

I have most certainly felt better and noticed big improvements after just 2 injections. (I've had 7 amps in total)

The palps and breathlessness improved greatly. Feelings of anxiety practically gone.My appetite is better. But the biggy for me is the brain fog lifting and being better able to make a decision and think more clearly. Improved energy levels.

My wife noticed a big change in me.....like I had finally 'unwound'. So as far as in concerned that's diagnostic.

Just incredible what the correct amount of a vitamin can do to making you feel better.

I thought ongoing therapy maybe 1 a week for a month, then once a month for 3 months then every 3 months. How does that sound to you good people?

I have a long awaited appointment with a Prof of Endochronology next week so hopeful that might finally get on top of it all. Not holding my breath though...although I can hold it for longer now since the B12 jabs hahaha.

Thanks for all of the advice folks ;0)

Nige

Good to read you are feeling so much better, yes its the brain waking up again which is very nice..The best treatment per person is to avoid getting symptoms back again. I spent years trying to reduce my frequencies of injecting and what I think happens may not count for every one, but the first bigger gap is fine, the second you think hum, perhaps I'm not doing that well, the 3rd is I am not at all well, back to the beginning and it takes time then to get back to feeling well again sadly enough. So listen to your body and try not to try longer gaps than feels right is the best advise I can give (and never follow). Make sure you have some monitoring of folate and ferritin is wise and taking a good multi vitamin should help keep things a bit in balance. Marre.

Flatfred profile image
Flatfred

Hi Marre. Interesting what you say about starting out good but then noticing less time between doses. It's only been 8 days since I had the last of 7 amps and already feel a little 'needy'. Problem is I don't know where my level is now at and if the 7 amps...one every other day for 2 weeks, was enough to get the levels up to where they need to be. I'm thinking not...so, should I continue for every other day for maybe 10 days...then weekly for a month or so?

I've a long awaited appointment with Prof of Endocrinology on Weds re thyroid/petuatory so maybe the B12 will come into it somewhere too. We shall see.

Thanks again for words of help.

in reply toFlatfred

Best is to reduce slowly, so if it was every other day, add one day only; to every 3 days, move a week later if OK to every 4 days etc seems to be the safest. Not that I ever took that good advise, there is the issue of convenience, and not wanting to inject more often than is absolutely necessary, in my case. Inject before you get symptoms is naturally the only way to stay symptom free. Always good to ask an expert, re Prof of Endocrinology.

Flatfred profile image
Flatfred

Hi Marre. Well that's sounds like good advice. I had an injection today and within the hour felt better. Is this psychological do you think or can you feel better that quickly. My daughter always says she feels better immediately. It'll be interesting to hear what the Endo has to say but I might not put to much I store of what he says....after all, my GP said I didn't need any B12 as I was within range. Think I'll go every other day again for a week,as you say, then slowly down.

Thanks again Marre.

Nige

It can be that quick, it seems very different per person, one of my daughters on B12 feels hyper, and can not sleep after a B12 jab, whilst other sleeps terribly well particularly after a B12 jab. It is so very different per person. I do not notice much improvement initially, usually get tired some 4 hours later, but will wake up much clearer, and have lots more energy the next morning (with cyano jab, if hydroxo jab it can take me days before I feel a lift).

Not what you're looking for?

You may also like...

B12 injections

Hi I have b12 deficiency diagnosed three years ago and received six injections every three days...
Alfabeta profile image

B12 injections

I am new here and need a bit of advice. I ordered the B12 hydrocobalmin today but am struggling to...
Inishfree profile image

Private B12 injections

Hello I'm new to this section of the forum. My husband has pernicious anemia and the GP will only...
timmysmom profile image

B12 injections

I’ve been doing my own jabs for about 6weeks I’ve done everyday for about 3weeks now gone to every...
Shellbes profile image

B12 injections

Hi. Having just had another run in with my GP surgery who now want to drop B12 injection to every 3...

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.