Self sourced B12 injections - Pernicious Anaemi...

Pernicious Anaemia Society
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Self sourced B12 injections

LuluCops
LuluCops

After months of talking and wondering between us, being messed about by the NHS. Getting worse and neurological symptoms getting worse.

We decided that we would source some from a German pharmacy. They were really good, after looking at all the research and online posts we settled on Hevert Vitamin B12 Depot.

We thought it was a 1mg injection in a 1ml vial, however it’s turned out to be 2ml vials- ,so do you just use the whole 2ml or do we use 1ml and waste the rest?

How often are we meant to take them if they’re 2ml? How quick before we start seeing results from symptoms. My exhaustion seems to have gotten way out of hand, I am dropping all the time, I can literally be talking to my husband or my children and fall asleep there and then, mid conversation xx

Thank you in advance

Shelley x

10 Replies
oldestnewest

I suppose it depends what you have been having and how often

I understand the need to take it into your own hands as tou feel you will benifit from more frequent injections. but double the dose seems an awful increase in one injection.

I'm sure others csn give you advise who self inject and may aksi have git the wrong vials

Is it not possible to get what you intended if the company are good?

LuluCops
LuluCops
in reply to Nackapan

I thought we had ordered the 1ml vials. It’s the right dose, just in a larger volume of liquid? That’s how I understand it- I think?

I’ve been having a nightmare with my GP, refusing to treat me even though I’m only ‘just’ in normal range and the symptoms I have are just intolerable! There’s also a strong family history.

Nackapan
Nackapan
in reply to LuluCops

Hope you get results soon . It's horrid feeling so rotten.

If you take the two ml, you will get 1000mcg - this would be the same amount of B12 as the 1000mcg/1ml ampoules. I mistakenly purchased the 2ml ampoules and choose to usually inject 1/2 in the morning (500mcg B12/1ml) and the other half in the afternoon before I hit my usual afternoon decline. This works well enough for me. I just draw up two 1ml syringes right after opening the ampoule and store the second one with the needle cover back in place and put the filled syringe in a dark cabinet until I am ready to use. I have forgotten it on occasion and used it the following day with no ill effect.

If you prefer to inject less often, you can purchase larger syringes and just inject the full 2ml all at once. I have tried this and it really didn't result in any additional discomfort. I was afraid that it being twice the volume of liquid it would hurt more but, in all honesty, the solution seems to sting a bit less than the 1ml ampoules. I am guessing that this is because it is more diluted.

If you only used 1/2 of the vial, you would only get 500mcg of the B12 not the full amount of 1000mcg (which is 1mg).

That makes sense to me and is a very good idea! Thank you x

I used to use the Hevert ampoules until I discovered Rotexmedica B12 Depot . The effect is the same . It’s convenient to inject less liquid and Rotexmedica are cheaper . I’ve been self-injecting for 4 years now ( diagnosed PA ) because of my GP’s ignorance . My life has changed , as yours will . Very best wishes .

LuluCops
LuluCops
in reply to wedgewood

How soon before I start seeing any difference wedgewood? And how often should I be taking the injections? Thank you

wedgewood
wedgewood
in reply to LuluCops

It’s hard to say how long it will take to see a difference , as we are all different in our make up, and it also depends how long you have been deficient. You should be taking the injections at close enough intervals to keep symptoms at bay .

To start with , you should inject “ loading “ doses -that is 6 injections over 2 weeks . Then one injection every other day until the symptoms fail to improve. So you might be left with an irreversible symptom ( All my symptoms disappeared, except that my previously completely numb feet were left feeling as though they were burning hot— a great improvement nevertheless ! )

Thereafter , injections should be timed to maintain that status that you have achieved . I, for instance need to inject once a week . Some people manage on one injection every 3 months , or even twice a day . Make sure that you eat plenty of folate ( green leafy veg peas etc. Or take a modest daily folic acid tablet -say 400mcg .)

Very best wishes .

I ended up with these 2mg cspsules too, being unable to find the 1mg at the time on the Versandapo site. The first time I used half and wasted the other half. The second time I used the full vial and had no problems - no pain pushing the liquid in as long as I took it very slowly. I did find it a bit difficult to sleep the first night! I only inject every four weeks anyway so am unlikely to find it too much.

Zusammensetzung / composition

1 Ampulle zu 2 ml enthält: contains

Hydroxocobalaminacetat 1000 µg (1mg)

(Depot Vitamin B12)

Sonstige Bestandteile: other ingredients

Natriumacetat/Essigsäure (Acetat-Puffer), Natriumchlorid, Wasser für Injektionszwecke.

It holds only 1000 ml of Hydroxocobalamin .

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