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Pernicious Anaemia Society
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How often should I self-inject?

I've been self injecting hydroxocobalamin since April 2018. I was diagnosed with B12 deficiency in October 2017, had my six/seven loading doses and then given injections in three monthly cycles. I found that within a week to ten days all of my symptoms were returning so I went down the route of self injecting. In April I gave myself injections every other day. I then went down to injections twice a week. Now I'm injecting every day and I can feel my symptoms returning if I don't inject. I've now ordered cyanocobalamin injections from Versandapo. I know I need to inject these more often but is it safe to inject twice a day and then slowly reduce down to one daily and eventually maybe twice a week? I also take folic acid daily, ferrous fumarate, vitamin C, cetirizine, propranolol and lymecycline and fultium D3. I'm 19 years of age and female.

Thankyou in advance!

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There is no danger of overdosing with B12 , so just keep giving yourself enough to keep symptoms at bay. Yes you are right, Cynocobalamin does not stay in the system as long as Hydroxocobalamin , so change over as soon as the Cyno. is finished , and you will find that you do not need to inject so often. Best wishes .

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actually the studies don't show that cyanocobalamin is retained less than hydroxo - they show that on average cyano is retained twice as long but for significant numbers of people this isn't true and some actually retain cyano longer than hydroxo

However, it is always worth trying different options.

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I had read somewhere that the NHS changed from using Cynocobalamin to Hydroxocobalamin for the reason that Hydroxocobalamin.stayed in the system longer , and that then the injections were changed from monthly to 3 monthly , for that very reason .

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other countries - eg Germany - use 1 monthly for both cyano and hydroxo. The study that is quoted as potentially justifying 2 monthly for hydroxo does actually say it is an average and that there was too much individual variation to take it as a hard and fast rule.

I suspect the switch to hydroxo in the first place probably had more to do with the risks of administering cyano to patients with lebers (although lebers is a rare condition) ... the rest is probably just misguided penny pinching.

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Thanks Gambit62. B12 deficiency is a total minefield . I never know what to believe ! But I believe you ! I feel I really shouldn’t respond to questions on the forum . I obviously know too little .

It’s very hard with the NHS to get 2 monthly . I had a PA diagnosis , with totally numb feet up to my ankles , but could not get 2 monthly . The feet were diagnosed as being “ Ideopathic” Hence I self-inject , and my feet are almost normal now, after 3 years of weekly injections .But this forum has been a Godsend, thanks to folk like you.

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please don't stop replying - your responses may not be perfect but neither are mine and we all have things to learn.

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👍OK!

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could I please ask you what the name of the cyanocobalamin injections you buy in German as cannot work it out from photos on Versandapo and want to get the right ones. thanks so much. J in Ireland

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