Self injecting prescribed by GP? - Pernicious Anaemi...

Pernicious Anaemia Society

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Self injecting prescribed by GP?

karent75 profile image
31 Replies

Hi,

Please can anyone advise me if you are currently self injecting B12 prescribed by your GP here in the UK for PA?

Also, if you have been prescribed and shown how to self inject by your GP surgery, where abouts in the UK are you situated?

I am struggling to obtain a nurses appointment in the afternoons at my GP surgery. I am self employed and unable to take time off to have a morning appointment as this would mean having to take a whole day off resulting in a day without income.

I have explained this to my surgery but seem to be going around in circles. I am therefore wanting to ask of those who self inject, was this prescribed by your GP?

I have also explained that I cannot understand why we can’t SI under the GP/Nurses guidance as its a much needed vitamin, not a drug, not to mention those who inject insulin are permitted to do this themselves which is prescribed!

TIA

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karent75
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31 Replies
jade_s profile image
jade_s

I'm not in the UK so I'll let other members answer regarding their particular situation, but I do know from reading the forum that there are plenty of UK people here who self-inject (SI) without a prescription. Injectable B12 can be bought online as an over-the-counter product from German pharmacies. It's also where I get mine. If you want that info, just ask.

There are also some lucky folks who are getting them prescribed - hopefully they'll pop in and give you some suggestions.

It can be daunting to start SI on your own, but I promise, whichever route you choose, you will not regret being proactive about your health.

You are 100% right, it's a vitamin, not an antidepressant or narcotic that they give out like candy. :/ Even more ironic, you can kill yourself from too much insulin, yet diabetics are allowed - encouraged - to manage their own health. It makes no sense that we get denied a cheap, completely non-toxic and non-lethal, life-saving vitamin!

karent75 profile image
karent75 in reply to jade_s

Hi jade_s,

Thank you for your reply.

If you would kindly send me the information of where you purchase your B12 from it would be very much appreciated.

I really hope a few people will tap in shortly (from the UK) who are SI'ing as prescribed by their GP, as I am wanting to go armed with information to the surgery seeing as they are not able to offer me afternoon appointments. Surely as a duty of care, if they cannot accommodate then they should advise where I can go (referred by them) as this is a lifelong illness that requires lifelong treatment.

As you say, it is ironic that GP surgeries do not encourage us to manage our own health when B12 is one of the cheapest and much needed vitamins that keep us alive!

Thanks again for your reply and I look forward to receiving the information of where you purchase your B12 from.

K

jade_s profile image
jade_s in reply to karent75

Scroll down to wedgewood's replies on these posts:

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Many of us use the Panpharma brand, which contains 1000 mcg of hydroxo B12 in 1 mL of fluid. There is also Hevert, which has the same 1000mcg but it's 2 mL of fluid, so can be difficult for subcuteneous injections. Many people also use the Pascoe brand, it has 1 mL fluid but a slightly higher dose of 1500 mcg B12. Sometimes Versandapo runs outs of Panpharma so you can sign up to receive notices when it's back in stock (you have to create an account first). The first post above lists other pharmacies that deliver to the UK.

You will also need to decide if you want to do intramuscular (IM) or subcutaneous (SC or subcut) and then buy the appropriate needles and syringes medisave.co.uk/ . A 2mL syringe is easiest, for either method. It gives you room to draw up the ampoule contents. For needles: For IM you can use anywhere from 21 to 25 G (gauge) x 1". 25G is the finest. For SC you can use anywhere from 27G to 31G x 0.5". I use 27G because the 30G and 31G are hard to draw up, they are so thin. There are many videos online where you can learn to self-inject (SI).

If wedgewood wanders by and see this, she might be able to PM you the most recent info.

karent75 profile image
karent75 in reply to jade_s

jade_s this is fabulous, thank you.

I think I will go down the route of SC and the sizing of the needles you have mentioned is a real help to me.

I guess I will need to find out where I can take used needles to for disposal. I am reluctant to even mention this to our Dr’s or the pharmacy within the surgery as I am sure they will not help!

jade_s profile image
jade_s in reply to karent75

You're welcome!

You might want to start a new post on disposal. I'm not overly familiar how it works in the UK. I think in some places the council will pick it up, but not all. You should be able to buy a sharps container from medisave or the german pharmacies though.

Not everyone tells their GP. I haven't. Others do, to try and educate them. It's very individual!

karent75 profile image
karent75 in reply to jade_s

I will do a bit of research and see what I can find out for our area. If I have no luck then I will post again here regarding disposals and see what others suggest.

I will definitely not be telling my GP i am thinking of self injecting in fear they stop my 8 weekly shot through the surgery….the one which I now can’t have an afternoon appointment for!!!!

jade_s profile image
jade_s in reply to karent75

Now that you mention it, I have heard that happening. I'm sorry there are so many hoops to jump through! Absolutely do what's best for you and your health! Good luck and do post again if you need more help.

Delilahmy profile image
Delilahmy in reply to karent75

just ask in your pharmacy for a sharps box …. They will give or sell you one … about £5

jade_s profile image
jade_s in reply to karent75

You might also find some useful info on Tracey Witty's Writing to your Doctor page b12deficiency.info/writing-...

karent75 profile image
karent75 in reply to jade_s

This is great, thank you.

If NICE states (during the pandemic): People who are already self-administering IM hydroxocobalamin should continue to do so, then I cannot see why it is not an option for patients to SI now.

jade_s profile image
jade_s in reply to karent75

Ha! Exactly.

bambuko profile image
bambuko

Yes, I self inject B12 prescribed by my GP.

Yes, I was shown how to do it.

There was resistance to me doing it and it took some convincing...

I have to supply my own needles etc

Disposal - so far haven't had to do it yet

just collecting needles in my yellow sharps container and will face it when the time comes



karent75 profile image
karent75 in reply to bambuko

Thanks for your reply. Whereabouts in the UK are you please?

I am trying to get as much info as possible to go back to my surgery as they are doubting that others are SI here (prescribed by their GP).

bambuko profile image
bambuko in reply to karent75

I am in Devon, but I doubt it has much to do with location?

It is more likely, to do (in my opinion) with individual GP and his attitudes.

Mine looked after me for 27 years and had very open minded approach....

and it still took some time and a lot of arm twisting before he has agreed 😀

Nackapan profile image
Nackapan in reply to karent75

I have a prescription for b12 .I have IM at the surgery and do Sc at home.

The problem was Sc is not licenced in the UK for b12.

It took a neurologist to write to the Gp.

Needles seem difficult to prescribe so I didn't push that as can buy them easily.

HeartyGilly profile image
HeartyGilly

I am in the E Mids. I have GP injections every 8 weeks but need to self inject at four weeks. My GP is aware. If I am away when it should be a GP injection , I ask for a prescription so I can do it myself. No problems.

karent75 profile image
karent75 in reply to HeartyGilly

I am exactly the same! I have my injection every 8 weeks but have said to the nurse for years that by week 4 I am struggling.

HeartyGilly profile image
HeartyGilly

sorry I should have added that for self injecting at 4 weeks, I buy my B12 from Germany, the GP prescribes 8 weekly.

karent75 profile image
karent75 in reply to HeartyGilly

Thank you. I am now going to go down the route of buying a supply from Germany and SI in between…that’s if I can get an afternoon appointment now at the surgery! 🙈

witchcat43 profile image
witchcat43

I’ve been SI with the doctors knowledge since lockdown started. I rang to book my jab to be told everyone was being put on tablets, told them that wasn’t going to happen with me…I’d already kicked off the year previous when a nurse decided I didn’t need them any more (I don’t know how long she’d been living in my body to come to that conclusion lol) told them I wanted to come in for the nurse to teach me and I’d do them myself from then on. The following year (21’) the pharmacist decided I no longer needed jabs as my levels were over 2000 and he stopped my 8 weekly prescription…big mistake, so in saving them money by doing them myself they’d tried to take them away again, wrote a stinking letter to the Practice Manager threatening solicitors etc, then got a phone call from the sniveling weasel himself saying he’d spoken to a haematologist who said I can be ‘allowed’ one jab every 3 months…wasn’t happy but took it as a win just to get them back on prescription. For the next 6 months I was sent 1 B12 amp in a box, the other 4 having been taken out. As this whole B12 fiasco has been about saving money, how could they justify just sending 1 when it’s a fixed price for a prescription to be to be ‘serviced’ by a pharmacy…or have I got that wrong 🤔 ( have also been buying them from Germany for over 4yrs) needless to say I’ve now changed surgery and so far have had no problems 🤞🏼

Sorry for the rant.

EllaNore profile image
EllaNore in reply to witchcat43

(I don’t know how long she’d been living in my body to come to that conclusion lol)

hahaha right!!?

Nackapan profile image
Nackapan in reply to witchcat43

I've had the same problems but fought to keep my prescription.I also bought some.

Shouldn't have to be like this.

It wears me out.

I'm not giving in though.

Tablets do nothing for me.

witchcat43 profile image
witchcat43 in reply to Nackapan

Nackapan its a battle we really shouldn’t have to be constantly fighting but no doubt we’ll carry on just to stay upright, it’s sad that we have to do this but until the medical world learns just how important B12 is the battle will continue.

deniseinmilden profile image
deniseinmilden in reply to witchcat43

Found you!! 😃❤️

witchcat43 profile image
witchcat43 in reply to deniseinmilden

Oh you clever girl 😂

Littlelodge123 profile image
Littlelodge123

yes I self inject with GP consent.

Yes I was shown how to do it.

I SI every 8 weeks

I am in Scotland

Nackapan profile image
Nackapan

I am prescribed b12 to self inject.

No training g given.

I do subcutaneous b12 injections at home

Buy my own needles.

I use 30G 1/2 " needles

no problem drawing it up.

I use a 2ml syringe .

Have IM b12 at the surgery as well.

Nackapan profile image
Nackapan

I get a shape box on prescription.

can bu one ftom a chemist.

I've done that too.

£1.70 Had a phone no. On it . Put it out for collection when you ring to arrange a day.

LizWilsonpa profile image
LizWilsonpa

Hi. I have B12 on prescription - monthly. I was taught to self-inject by a nurse (on request) with lockdown and no longer go to the surgery for my injections. I get 5 ampoules prescribed at a time - increased from 1 each prescription. All of this has taken some assertive asking! And is the result of using info from the PA Society and a couple of key staff actually listening.

I’m in York.

I also self-inject EOD, buying my supplies from Germany. The surgery are not aware of this although I do intend to tell them at some point (mainly to raise awareness generally).

EOD has turned my life around! Good luck.

lambuth_eagle profile image
lambuth_eagle

I'm in the US, but I am prescribed self-injecting from my neuro. Every three day injections. My PCP's office taught me how to do them.

deniseinmilden profile image
deniseinmilden

Totally!I was shown how to SI by a nurse at my surgery and they supplied me with ampoules for a while.

Then suddenly stopped my prescription for daily jabs without warning, despite being given the support of a neurologist they sent me to, saying I could only have them once a month - which doesn't fit with any guidance and would have left me for dead!!

Thankfully by then I was well enough to be able to buy them online and have done so ever since - over 7 & 1/2 years. I have been able to buy the higher strength ones for daily SI and haven't looked back.

I'm self-employed and know your pain.

I get regularly messed about the dispensary at my Drs (they frequently just cut my meds without warning or won't send my prescription to the pharmacy) and have recently been messed around by my GPs over antibiotics, hence causing antibiotic resistance and a heap of other trouble.

I'm just getting back to working properly after being ill from mid September, and too ill to do anything from the end of November. 😔 They have no idea what it is to not be paid and the suffering the lack of income alone causes. I've still got pleurisy, and a number of deficiency issues.

Having had enough B12 for years I am pretty mentally robust and don't worry about much, but I live with the constant legitimate fear that they are going to mess me about over the meds I rely on to survive.

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