up to date with gp

[jillc39]

I have been to see the most senior gp after the trouble I have had with my gp. The fight is over more frequent b12 - she said you can overdose (told her you cant) no nhs gp will give b12 injections more frequently than four weeks. Is this right?

[Gambit62 Administrator]

injectible hydroxocobalamin is only licensed in the UK to be administered once every 8 weeks. not sure what the position is with cyanocobalamin - which is used by some GPs but isn't the one recommended and not sure whether that is actually licensed or not - I'd be surprised if it was licensed for more frequent use than 4 weeks

(looking at the BNF it mentions cyano injections with maintenance at monthly but also states in other details that if injections are being used they should be hydroxo)

The licensing process is, I believe, initiated by the supplier requesting the license for their product - which would then be reviewed and presumably either granted or not.

injectible cobalamin is covered by the prescription only regulations in the UK by virtue of the fact that all injectible substances are prescription only by law.

hydroxocobalamin is used in other countries without being a prescription only medicine. Both hydroxo and cyano sourced from Germany come with instructions that recommend administration monthly.

So, basically any GP that administers hydroxo more frequently than 8 weeks is open to scrutiny and potential persecution by the rest of the medical profession (and persecution is appropriate from a number of reported cases where this has happened).

In summary - I think your GP is wrong as I think the correct answer would be 8 weeks given the state of the law and licensing arrangements at the moment. However, 8 weeks is a load of hooey but don't know that any manufacturers feel it is worth applying for a more frequent license and really don't know how you get that to change.

The BNF also quotes hugely overflated costs for a phial of B12 anyway so not exactly the most accurate source of information on cost.

[Foggyme Administrator in reply to Gambit62]

Hi Gambit62. Now I'm really confused. Just wondering how this fits with the treatment guideline of every other day until not further improvements, for those with neurological symptoms.

If it's licenced for 8 weekly injection, then how can the guidelines advise something so very different? Am I somehow missing the plot, do you think?

Or are there just so many plots I've tangled myself into a real mess?

[LtAngua52 in reply to Foggyme]

I think the 8 weekly rule is the maintenance treatment after the loading doses when there are neurological symptoms. It's every 3 months without neurological symptoms.

[Foggyme Administrator in reply to LtAngua52]

Ah ha. Thank you LtAngua52. That makes perfect sense. Long may the loading doses continue (when we can get them!) 😬😃

[fbirder]

Many GPs like to give the impression that they will be pilloried if they prescribe any drug off-label (out with the terms of its license). They are lying (or they are ignorant of the rules they are supposed to be following).

This is what NICE say about it...

Unlicensed or off-label medicines have a valuable role in the care of certain patients when there are no suitable licensed medicines available which meet their needs.

[jillc39]

I think there is a real confusion over the frequency - I told her about the once every other day etc etc and she said she had never heard of it. I found myself floundering..... haematologist said once every four weeks or possibly more according to symptoms. this has been totally disregarded. I have bad peripheral neuropathy - she smiled and said we will sort it out....... I have been trying to sort it out since December, one way or another,. She was happy enough to fill my prescription for codeine to help with the pain.

[fbirder in reply to jillc39]

Have you tried something else for the neuropathic pain? I use gabapentin, others have had success with Pregabalin and amitriptyline.

I would seriously think about going over her head. Do you have the haematologists recommendation in writing - in a letter with the GP also as a recipient?

[jillc39 in reply to fbirder]

yes fbirder I have been on gaberpentin and am now on pregaberlin. cant take amitriptyline because of cardiac problems. yes, she did have a letter from the consultant - shocked she did not know about the NICE guidelines if there is neuropathic pain....

[Sleepybunny]

Hi,

Can't remember if you are a PAS member. If you are a member, the PAS might be able to write to senior GP outlining current guidelines.

Has the senior GP got a copy of the "BCSH Cobalamin and Folate" guidelines? Or a copy of Martyn hooper's latest book whish I think mentions that soem people find it difficult to manage on the standard treatment.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

The PAS website has a section for medical professionals. Perhaps there may be something in here that would be of interest to your GPs.

pernicious-anaemia-society....

The PAS have been assisting with a research project about how often b12 is prescribed...see links.

martynhooper.com/2016/06/01...

martynhooper.com/2016/05/07...

martynhooper.com/2016/07/06...

[jillc39 in reply to Sleepybunny]

yes, I am a PAS member, and I do have Martyn's book.

[sweetnessandlight]

The BNF says protocol for neurological symptoms is every other day until no further improvement then every 8 weeks. Gps just need to read on a bit to find it.

[jillc39 in reply to sweetnessandlight]

I know I know - but she didn't believe me.