Injection Frequency

[MW20]

Doctor has contacted me tonight to reduce my injections from 6 to 8 weeks, I experience regular tingling in addition to the usual trademarks. Best M

[Nackapan]

Did you challenge the doctor?

What reason did they give?

I've been on 2 weekly.

Go trying yk get a bigger gap. I tried the tablets to get me to 3 weeks a few times.

I'm back to 2 weekly with the surgery and also got my ow now. To

try weekly.

If you know 6 weekly works for you write to Gp. Just say you were caught off guard on the phone.

You definitely need 6 weekly or more??

Give symptoms building up to your Injection.

[MW20 in reply to Nackapan]

Been on 6 weeks 3/4 years ... the new nurse decided to refer it to the doc and said the min was 8 weeks, I’ve asked for a call from the doc as my app was tomorrow! I’ve developed tingling on the left side of my face recently... which is no great both, just a little weird and unnerving! Thanks for your help xx

[Xena2202]

I would challenge that decision, as you have symptoms already at 6 weekly, stretching them out longer could cause return of symptoms and permanent damage. I know others on here have posted guidelines which will help you talk to the doctor. Here is one that may be useful

pernicious-anaemia-society....

[MW20 in reply to Xena2202]

Really appreciated, felt like an inconvenience re the surgery! x

[Cherylclaire Forum Support]

I can't understand how this change is beneficial to you.

You have been put on a frequency of 6 weeks: the original reason for the decision regarding your frequency notwithstanding, there has now been 3 or 4 years of evidence amassed to suggest that this frequency is suitable for you. None to suggest that you should have less than this. For instance, an adverse reaction (which would have been apparent from the start and is rare) or evidence of overdose (which is not a possibility).

So why the fuss ?

The nurse may believe the minimum to be 8 weeks from her own professional experience or because the guidelines suggest 2-3 months or just because none of her patients have ever admitted to self injecting top-ups between her NHS injections (!)

Those with a hereditary problem at cellular level are given 2 injections a week - because they need to access B12 at this frequency.

We are all different: my cousin does well on one injection every 6 weeks. I have recently reduced mine to one every third day. Still have some daily symptoms- but so much better than I was.

Keep a daily record: one column to list your symptoms- if you have many and varied, try the most frequent / the ones you would most like to get rid of. Top ten if you like ! Include a few visible ones if possible. One column: dates. Mark when injection given. Then mark occurrences of symptoms. It will probably then give you an indication of when symptoms return in relation to injection- perhaps even a pattern emerging, which might well help your case long-term.

Meanwhile, ask why the reduction has been made.

Get back in touch with surgery as soon as you are getting a return of symptoms (especially any worsening neurological symptoms)and tell them this. It might be difficult to contact a GP right now, but increasingly less so, I'd hope.

I'm not a medical professional.

[MW20 in reply to Cherylclaire]

Really appreciated thank you! A doctor called this morning and reluctantly agreed to allow today’s injection stand... no further appointments booked until he has spoken with my regular GP tomorrow... basically he stated they are only licensed to administer the injection (minimum) every 8 weeks! Personally speaking my case is hereditary. Best Matthew.

[Cherylclaire Forum Support in reply to MW20]

I saw an Inherited Metabolic Diseases consultant - well in fact I saw three ! My DNA was tested to find a reason why I seem to need so much B12 to get any sort of respite from symptoms and why MMA is raised.

Sadly, although I was convinced that something would show up, finally after 2 years, nothing did. My immediate family all have autoimmune problems: Grave's disease, vitiligo, psoriasis etc. My sisters' children all have autism. It seemed that finally I would find out something- for them if not for me - so was quite disheartened. This was the end of the road in terms of investigation for me, too.

The last Metabolics consultant I saw was from Australia, and knew about the PAS (actually suggested talking to them for support !), knew about Martyn Hooper and even knew about the research trials he was involved in. Impressive. She apologised for not finding anything. She was the one who told me about the 2 a week B12 injections recommended for those with an inherited functional disorder at cell level - and how frustrating it can be when GPs ignore this advice !

(Why send patients to consultants ....?)

I had by this time seen 3 gastroenterologists, 2 haematologists, a dietitian, ENT, oral medicine, a neurologist and so it really was the end of the line. There is no-one else I need to see or tests that I need done.

It has taken 5 years to get this far.

I had my B12 injections stopped a while ago because I self inject a lot more often than the 8 weeks NHS frequency the surgery want me to try and survive on. This bothered me at first - but the alternative scares me stiff.

Now not bothered.

I wonder what your GP believes is wrong with you - Pernicious Anaemia ? Functional B12 deficiency ? - and why. Have you ever had your methylmalonic acid (MMA) tested ? Do you think you have inherited PA or some functional problem ?

Maybe worth pursuing - in the meantime, good that you got your injection, however begrudgingly given. If their surgery is only licensed to administer injections every 8 weeks, what have they been doing for the last 3-4 years ?

B12 : costs about 70-odd pence, stops us deteriorating irreversibly, helps control some really awful symptoms and does no harm.

I fail to see what can possibly be wrong with that.

[Sleepybunny]

Hi,

"he stated they are only licensed to administer the injection (minimum) every 8 weeks! "

UK GPs are allowed to prescribe off-license if they feel it is in patient's best interests.

See link below.

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

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

healthunlocked.com/pasoc/po...