Increase in injections

[Nancy38]

I get my b12 injection every 8 weeks but still struggle through the last two or three weeks, do I have to get the GPs agreement to get my neice who is a nurse to give me injections every other month, or can I just go ahead with it? Would appreciate any advice

[Nackapan]

Ask your doctor.Thwh may prescribe injections more frequently. Write saying your symptoms and when they return

I'm on 2 weekly injections prescribed.

I've actually got my own supply now as after a year of 2 weekly am doing a trial of every 5-7 days to try and function.

If no joy then if you use the same sort of b12 your body is used to you should have no problems having more.

So many on hers are under treated and have to self inject.

[Nancy38 in reply to Nackapan]

Thank you, I will ask to have it increased although don't hold out much hope . Good luck with your trial and hope it works out for you.

[Nackapan in reply to Nancy38]

Thank you.

Hope tour Gp increases your injections

[wedgewood]

You should first try to get your surgery to give you extra injections . If you get nowhere with that , then I would buy some ampoules from a German online pharmacy ,and self-inject or get your niece to do it . Be aware that your doctor will not approve of this , and may stop your NHS injections if you tell him/her .

Not all doctors are as obliging as Nackapan’s .

[Nancy38 in reply to wedgewood]

Thank you for the advice, it's true what you say, the GP doesn't understand she told me 2 years ago that once a year would be enough. I'll ask, if she says no then I'll get my own

[Miss-guineapig in reply to Nancy38]

I agree with Wedgewood's advice. I buy from Germany and administer at home inbetween my 8 week 'prescribed' injection. My GP doesn't know x

[Nackapan in reply to wedgewood]

They dont know to be obliging!!

I had to fight for the regime I'm on . I also got a neurologist to put it in a letter that I actually paid for.

Persiverence and writing down your symptoms in a letter helps Nancy38.

I'm afraid with b12 treatment it's a battle. Wrong I know.

It's good though for it to be on your medical notes what you are needing .Also for their education. It was the third neurologist I saw har a personal interest and told me to keep b12 levels up.

[Sleepybunny]

Hi,

When you were first diagnosed how many loading injections did you have?

In UK, BNF recommends loading injections every other day for as long as symptoms continue to get better for people with B12 deficiency with neuro symptoms.

These every other day jabs could continue for weeks even months if improvement continues.

Once improvement has stopped BNF suggests a B12 injection every 2 months.

For those without neuro symptoms, the recommended pattern in BNF is 6 loading jabs over 2 weeks then a jab every 2 or 3 months.

If you didn't have the recommended pattern of loading doses at start of your treatment, maybe you could ask GP to repeat loading injections?

BNF

bnf.nice.org.uk/drug/hydrox...

I suggest putting queries about treatment into a brief, polite letter to GP and to keep your own copy.

In UK, my understanding is that letters to GPs are filed with medical notes so hopefully less likely to be ignored than something said face to face or over the phone.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

GP may say they have to stick to the guidelines...if this happens

1) you could ask which guidelines they are referring to

2) discuss the possibility of GP prescribing off licence

GPs are allowed to prescribe off license if it is their professional opinion that it is in the patient's interest.

GMC article about prescribing off licence

gmc-uk.org/ethical-guidance...

3) some forum members choose to self treat

I wrote a very detailed reply on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

If you're in UK, be aware that the pandemic is impacting patients' B12 treatment.

Many UK forum members have reported injections being stopped/delayed

/frequency reduced or swapped for oral tablets.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.

healthunlocked.com/pasoc/po.....

I am not medically trained.

[Nancy38 in reply to Sleepybunny]

Thank you for your reply. I am in the UK and have been getting my injection every 8weeks as usual through lockdown. GP is phoning me tomorrow so will speak to her then.

[Cinders70]

I’ve got exactly the same issue. Last time I lasted 5.5 weeks and they agreed to give me an injection early. This time I was ok until the 6 week mark. I asked and a GP I’d not dealt with before said no, they are not licenced to give at leas than 8 weeks. I emailed again, to my usual GP, who has just ignored my e- consult email.

I have my 8 week injection booked for tomorrow but have slept so much the last two weeks and had to take annual leave from work as I don’t want to be off sick again.

Really annoyed. Will see what they say when I go to the surgery tomorrow, but I feel a letter coming on!

[Nackapan in reply to Cinders70]

Not licensed to give them at less than 8 weeks

That is not true.

Doctors can prescribe more if it's in the interest of the patient.

My Gp told me that.

They rarely budge from 2 weekly after every other day and weekly have been given for a period

B12 is not licenced tk be given subcutaneously by the nurses or to he prescribed

Again ad loads of drugs are prescribed 'off licence' I did eventually manage to get a prescription to self inject sc.

The nurses cant do it.

So there are ways around if.

I

[Cinders70 in reply to Nackapan]

Thanks Nackapan. I do have my own ‘stash’ in case of emergencies but wanted to try and go down the official route first, as I prefer it on my records how much I need. If I self inject I wouldn’t tell them.

I’ve just been for a jab this morning and expected a fight, due to my previous e-consult having been ignored. But the nurse was very sympathetic and has emails the GP on my behalf to see if I can get the jabs increased to every 6 weeks instead of 8. Fingers crossed. If it doesn’t work, I will self inject at 4 weeks.

[Nackapan in reply to Cinders70]

Good to hear.

Yes it should be on your notes I have it on mine.

Thet push people underground concealing what is needed by alot

People too ill to fight and quite rightly looking after no 1. But it's a huge ask doing DIY with n8 medical support Thars why this forum vital for everyone's experiences so you dont go under.

I normally have great respect for the medics. I've struggled with the current system and ignorance of this condition.

[Cinders70 in reply to Nackapan]

Yes, it’s a Catch 22 situation isn’t it? People obviously need more but fight to get it, so go down the self injecting route, which they feel they have to cover up or else incur the wrath of their GP.

Then the GP practice ends up thinking everyone is obviously ok on 12 or 8 weekly doses, and tells every one who is ‘new’ that ‘everyone else manages fine on these doses’.

Can’t win. And for the sake of something so cheap, readily available and safe.

[Nackapan in reply to Cinders70]

Exactly

[JanD236]

I was struggling with injections every 2 months and my GP allowed monthly injections for a trial period. I think he probably only meant it to be for a few months but luckily he put the vials on a repeat prescription which I order online and haven’t been back to see him since!