I pretty much react to most things in a negative way and have learnt to live with that.
For example.. I cant take a whole OTC antihistamine (loratadine/cetirizine)etc so I have to split the pill in to four and stagger the intake by 15 mins each and this helps a lot. Its a huge pain but I have learnt this about my body.
Therefore..........
A whole 1ml of Hydroxy shot in one go is way to much for me as I have tolerated headaches, anxiety and a number of "wreck the nextfew days" sides.
I have tried SI'ing 500mcg (half dose) which is better and can tolerate that but hate throwing half away no matter that its only 30 pence worth of Hydroxy.
Would the following be acceptable as I have read people doing this for the Hervert 2ml vial but mine would be for the rotexmedica 1ml 1000mcg
The procedure as Follows:-
Prep two Syringes with drawing needles.
Draw in 500ml into each syringe.
Replace drawing needles with injecting needles.
Use the one I need.
Place other in the fridge (covered) with injecting needle cap left on untouched to use three days or so later.
If I still find this dose (500ml) troublesome .... repeat above with 330ml (three syringes) and keep the second + third in the fridge. Use the third a week or so after the first, again with injecting needle cap intact untouched, as you know they have to be "clicked" off so they are still sealed.
Any thoughts would be appreciated.
Kindest regards
Written by
WorkingProgress
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Personally, I wouldn't. As soon as you break the seal on the needle and syringe packaging, they are open to the air and any bacteria that is in it. Even if they are not touched by you, they are no longer sterile.
I personally wouldn’t do this I believe these ampoules must be sealed for a reason and once you snap them open you are immediately exposing them to bacteria so sorry but I’d bite the bullet and Chuck away what you don’t use it is after all pennies worth isn’t it and in no way worth risking your health for but I’d guess in reality none of us really know the true answer so balls in your court.Best of luck with whatever you decide.
Just to say, I had problems with headaches when I had my first jab. I'd had undiagnosed P.A for over a decade, so guess that was why I reacted badly. I ended up with a migraine type headache and felt washed out for a few days. I did some home desensitization. I started off with a very small dose and felt fine. I gradually increased the dose by 0.1 ml each time and was very soon able to tolerate the whole dose without a pounding head. It may not work for you, but may be worth a try. You have my sympathies with the antihistamines. Non drowsy? Yeah right, cue too sleepy to function for 24 hours!
J had similar problems at the start. Felt I was bring poisoned. Headaches migraines tinnitus on speed. I persevered as my nervous system was on overdrive
I've read somewhere that 90 % is retained from a 100 mcg hydroxycobalamin injection, but only 30 % from a 1000 mcg injection, so smaller doses might be a more efficient use of the vitamin. The percentages are probably not exact, but an estimate.
If you can please find the reference, we can evaluate its reliability. Absent that, I would still prefer to be retaining 300 mcg rather than 90 mcg, in absolute terms. Or 1000 mcg rather than 100 mcg, if there is no foundation to it.
Aamoi???? Not familiar with that abbreviation. I can not take 1ml at all so have stepped it down to 0.4ml every two to three days. We believe that something else is going on besides b12 to do with the lack of production of new cells. I am painfully waiting for appointments etc for further testing.
The info is from a reliable source, though in Swedish. It's from a reference work used by medical professionals.
Edit: Found the same info in English.
Hydroxocobalamin is better retained than cyanocobalamin; 90% of a 100 microgram dose and 30% of a 1000 microgram dose are retained, a range believed to be sufficient for body requirements for 2 to 10 months.
It looks like you have found the source of the ‘stored in the body’ claims that the NHS was using at the start of Covid to justify not giving injections any more, and even to cast doubt on whether tablets were needed.
But we all know our ‘cobalamin clocks’ are running down much faster than that; in our case, about 1000mg/month, when that paper suggests 60mg should do us for a month.
That study talks about the majority of the ‘lost’ cobalamin being excreted in the first 8 hours, perhaps as if there is a race between the liver and the bladder to grab the cobalamin, one to lock it up, and the other to flush it away.
But there is a big disconnect between the numbers given, and our own experiences here.
I wonder if the ‘2 to 10 months’ claim is based on applying simple maths to the amount of an injection retained, and the 1 to 2 mg per day observation, forgetting, or never considering, the world of difference between healthy people taking in 1 to 2 mg per day in their diet versus the bodies of PA sufferers trying to meter out liver-stored cobalamin, in good condition and at full potency, to all the right places, without further loss of any kind?
Just to clarify the Pernicious Anaemia.Org is not the Pernicious Anaemia Society (PAS), so no relation to the sponsors of this forum.
Of course Oxford BioSciences say the product is save to use like this - they’re selling it!
I do not know of a single medical professional who would countenance storing an unsterile product for multiple injections over any period of time. It’s not something we recommend here either.
To be honest, the idea of saving the B12 for 40 - 50 injections fills me with utter horror! Using this material is definitely a safeguarding issue and we would appreciate it if you would refrain from advocating this in the forum on future occasions.
We always advise medical grade single dose ampoules of B12 for injection purposes. These should be used immediately and, in cases where less than the full dose is required, any remaining contents should be disposed of immediately (rather than stored for later use).
My apologies I should have made it clear that the pernicious org is not related to the pernicious anaemia society. I have had severe suspicions about multi use vials. I am still finding my feet with all of this as many others have also experienced. The advice from this society has saved me from making many more mistakes for which I am so grateful. I am appalled that any company would say multi use vials are safe for The sake of money. I will gladly dispose of what I do not use.
Thank you again for all your advice. You have been a huge huge life saver.
Don’t worry, no problem WorkingProgress. It’s a lot to get a head around when first diagnosed (or not, as the case is far too often).
Even the manufacturers of medical grade sterile sealed multi dose vials (the ones with metal seals and bungs in the top) recommend disposal after 28 days! In contrast, that makes the advice you were given even more shocking.
So pleased that you’re finding the forum a good resource / place to be. We have some lovely knowledgable members who are so generous with their time and all look out for each other. Hope you continue to enjoy your time here.
I always read this topic with interest because here, in the US, multi-use vials are standard. The first time I was given B12 to si, it had 30 doses in it, and an expiration date 3 months away. So it horrifies me that here this is considered the norm, but elsewhere it is considered extremely dangerous. How can two such drastically opposing views even exist? It seems like science could answer this.
The B12 referred to here is powder B12 and not a sterile product and therefore not suitable for injection - much less storage for multiple injections over time. This is not considered medical grade and therefore does not need a prescription in the U.K. (medical grade B12 for injection is prescription only here). So this is different from medical grade B12 for injection which is sterile and produced to a higher (totally different) standard.
Medical grade sterile B12 for injection is not provided in multi-dose bottles in the UK. Some buy it online from various suppliers in Europe and the manufacturer Instructions state dispose of 28 days after first use. So the conditions of use are determined by the manufacture. And of course, this is safe to use fir injection - so long as the manufacturer instructions are followed.
So the objection expressed here is to the danger of contamination associated with injecting a non-sterile substance (the reconstituted powdered B12) into the body. And injecting a non-sterile substance that is then saved for use a later dates - utter madness.
I’m assuming that the multi dose bottles you have access to are medical grade sterile B12 in sealed vials with a bung in the top to withdraw each injection without breaking the sterile seal. In which case perfectly safe to use - again, if the manufacturers instructions are followed (including the use by dates determined by them).
So… not drastically opposed views - just different products (one of which is not sterile, not provided by a medical professional or pharmacy, not safe for injection).
Hope that accounts for what seems like a ‘difference’. Sure folks here would be happy to use medical grade multi-dose bottles if they were available and fitted with their injection frequently (multi dose vials would only be cost effective for those injecting on a very frequent basis).
Also worth noting that after loading doses (and excluding those with neuro symptoms) the NHS regime is for 8-12 week injections so the majority would end up having to throw away most of the multi dose bottle, so it would not be cost effective. The reason why the preferred medium for injectable B12 in the U.K. is via single dose sterile ampoules).
Well written foggyme. I got sold down the river with bad advice and a dangerous product backed up by dangerous claims. Grrrrrrr..... I am so angry people and companies will do this for money. Luckily I got away with it but for how long? It's all poured out and thrown away now. NEVER AGAIN.
When I was first diagnosed and had trouble getting sufficient frequency of injections from GP, I also purchased some of the powdered B12 for reconstituting and was horrified when it arrived and I found it was not a sterile product (some drugs come as powder in medical grade sterile vials - that is safe to use if reconstituted according to manufacturers instructions.
Like you, I threw it away! I now purchase single dose medial grade sterile ampoules to top up between GP injections. xx
As a matter of interest. So, over a week, you are taking 1ml, I know in instalments. And do you do that every week? I’m trying to get a sense of how much you take overall, in a month, say.
Oh wow ok. At first I was floored and totally bed ridden couldn't move heart beating out of my chest and short of breath, trembling, anxious and in such a bad way. I was taking 1ml per day for a month. Then reduced it to .5ml per day. Then .5ml EOD for another six weeks. I was beginning to feel better. Then I was able to walk do diy etc I was back in life again. All symptoms gone!!!! My GP told me to stop SI so i did and fell back aftrr 8 days. All symptoms returned but not as bad but the same symptoms. It took me two weeks on .5ml every day to get out of bed again. Now I SI when I feel it with 0. 4ml which is approximately Mon Wed Sat or sometimes three days in between which I why we believe something else is very wrong and needs investigating but the b12 is keeping me going until we can find what else is wrong. Apologies for the long answer but I go by feel for example when I start to flag and don't pick up. When my bpm raises too much upon standing. Basically listening to my body. I hope this gives you an idea. Believe me before this gradual decline and then "fall off a cliff"occurred in December I used to be extremely active walking an hour daily,diy,always busy doing things,gym go-er. It's very testing.
I take half an ampoule every two days as it works better for me, but discard the unused half.
Previously I was taking a full ampoule every four days, but my deficiency symptoms were returning between shots, and every time I took the injection I was getting some very minor side effects, which are hard to describe, but felt like it was onerous on my body to manage all that injection at once. Now with half an ampoule every other day, I have none of these issues.
Everyone will be different, see what works for you. But please discard what is not being immediately used.
And thanks to this forum for giving me the idea of not using a full ampoule. 😊
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