Self-injecting B12: One of the repeat... - Pernicious Anaemi...

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Self-injecting B12

helvella profile image
14 Replies

One of the repeat topics here is that of NOT being allowed by GP surgeries to self-inject B12.

To people like me, who doesn't need injections, this seems utter madness. Especially as the general prohibition likely results in more people doing SI without GP support. Indeed, I think many who SI prefer to avoid even letting their GPs know.

Some posts here have indicated there are GPs who are willing to support SI. (And I don't remember any posts from people who have had issues with SI in these circumstances.)

Clearly there are advantages to the GP surgery such as the only cost being for prescribing the necessary ampoules (and possible syringes and needles). Rather than staff to handle appointments and the actual injecting.

In the context of this extreme negativity towards self-injection, we now see NICE turning that around completely and actually endorsing self-injecting! OK - only for one medicine at present.

One of these medications – semaglutide, sold under the brand name Wegovy – will soon be available in UK chemists in the form of a weekly, self-administered injection.

theguardian.com/commentisfr...

I note that Boots will be including needles and a first sharps bin!

Further, Boots appear to be breaking through the general ban on promotion of prescription-only medicines by offering "4 Boots Advantage Card points for every £1 you spend"!

onlinedoctor.boots.com/weig...

Can this breakthrough be leveraged to get B12 self-injections accepted as a perfectly reasonable treatment option?

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helvella profile image
helvella
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14 Replies
Pickle500 profile image
Pickle500

It would be quite a marketable money spinner for Boots to offer B12 injections.

Seems to me, if I recall correctly, that B12 falls through a loophole because it's a vitamin. Vitamins are supplements and so can't be considered medicines.

But B12 in it's injectable form can only be prescribed by a Doctor. But maybe because it can't be packaged up and sold as a drug that no-one is bothering to do it.

When i was forced to go to the beauty clinics and spas to get my injections, I found they knew alot more about B12 than medics.

So either we're being gaslighted, the medics genuinely don't know much about it, or both.

shaws profile image
shaws in reply to Pickle500

My mother who had pernicious anaemia had to have regular B12 injections. If she was late getting her dose she began to feel less energetic.

Her GP told her after several years of B12 injections that her blood was fine and she needed no more injections.

Both my sister and myself thought that was 'good'. Little did we know the horror ahead. The result of that doctors advice caused my Mother to develop stomach cancer that caused her demise and my sister and myself had to plead for more pain-relief medication toward her 'end of life' care.

deniseinmilden profile image
deniseinmilden

Thank you for this!

However there are already loads of prescribed drugs which are dished out for SI at home - insulin being the most obvious, but methotrexate for rheumatoid-type arthritis, various hormones, especially for infertility, other things for arthritis and a friend had injectable drugs for something after a car accident.

The more ground that's made the better, but don't get too excited because so often it's OK to dish out things like omeprazole and antidepressants which have proven bad effects, but they treat essential vitamins and minerals like they are deadly: it's just nonsense!

Thrones12 profile image
Thrones12 in reply to deniseinmilden

spot on Denise.I was able to go online today and order hrt pessaries,when I was younger after my hysterectomy you wouldn’t believe the battles I had with umpteen gps and eventually had to pay private menopause consultants to help me get the treatment I so badly needed,now the powers that be have decided that their not the devils work they branded them previously and all of a sudden they have become safe enough to be bought otc.It’s all a money making exercise isn’t it,hopefully some genius somewhere will decide the same about our injectable b12 eh?? Xx

deniseinmilden profile image
deniseinmilden in reply to Thrones12

It's amazing it's it!You'd hope it was based on science, but sadly not.

helvella profile image
helvella in reply to deniseinmilden

But, if I have the right end of the stick, this can be done without your GP (or a consultant) being involved. And I think that is what would make it a first - an official, approved medicine being supplied for self-injection on what ends up pretty much a "for money" basis. (Yes - someone in the company has to oversee so they end up possibly closer to the "Pharmacy" product model in practical terms.)

deniseinmilden profile image
deniseinmilden in reply to helvella

I'm sure you're right - my thinking is so much better than it was, but isn't ever as clear as yours - and if that's the case it certainly would be a significant win.

We have seen several moves towards taking some things off the POM status and the POP mini pill for contraception, Sumatriptan for migraines and the HRT pessaries that Mr Peacock mentions above, are the first examples that come to mind.

Until about a dozen years ago, cyanocobalamin injectable was PML and therefore available OTC. I used to buy it fairly regularly for veterinary use.

Maybe this is a good outcome from Brexit and it may be possible to reset our own UK legislation in time? I certainly hope so. It's frustrating if it's a case of sorting out retrograde steps but better than nothing.

Thank you for time to encourage me to see the point properly - you have no idea how much it means to me!

helvella profile image
helvella in reply to deniseinmilden

However injectable B12 is not POM in Germany!

As I understand, the MHRA could have changed its status at any time. (Possibly a law change would be needed. But that would be a UK law.)

deniseinmilden profile image
deniseinmilden in reply to helvella

Yes, exactly! Sort of what I was trying to say and failing! 😃I've had enough B12 but am struggling to get enough other vitamins and minerals into me to make everything work! Hey ho!

Thank you for making it clear for others subsequently reading this.

MorningMist profile image
MorningMist

I recently ordered a b12 test kit from Superdrug who use one of the well known laboratories. If you are deficient - they also do an active b12 & intrinsic factor antibody test - they will provide injections. I think they say your gp has to be informed but for some people it could useful to know.

helvella profile image
helvella in reply to MorningMist

I think there is a double-prong gotcha, though. (Please correct me if I am wrong.)

First, they won't do them if you honestly declare you have Pernicious Anaemia.

Second, they cost a lot. Which matters hugely to those who need frequent injections.

FlipperTD profile image
FlipperTD

Good points, well made.

I broke my ankle two years ago. Whilst I was immobile, I was prescribed low molecular weight heparin in single-dose syringes. The 'training course' was as follows: Nurse turns up with syringe, sticks it in me, and tells me to do likewise, every 24 hours. This was about 2am. I was given a prescription for the hospital pharmacy [cheers, folks!] and as I live about six miles from the hospital, that was really helpful. However, my wife was able to go and collect the kit from a nearer hospital, and that went on for the next few weeks. The issuer of the script knew how long I'd be immobile, and gave me a script for a bit less than that, so I had to request another. So, they were very happy to provide me with the stuff, 15 seconds of training and a sharps bin to get rid of the evidence.

Why some discourage the self-injection of B12 is absolutely beyond me. Is it a 'power' thing?

Ho hum. Maybe some day, it'll change.

Tythrop profile image
Tythrop

Aren't eppipens self injections .When I kept bees these things were standard equipment incase of reaction to sting .So makes sense for self injection of b12 too

helvella profile image
helvella in reply to Tythrop

This Epipen product has a Prescription-only Medicine status:

mhraproducts4853.blob.core....

Seems a touch confusing.

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