B12 injections

[Alfabeta]

Hi

I have b12 deficiency diagnosed three years ago and received six injections every three days then an injection every twelve weeks which is standard GP practice. I have been told on here as have many people that with neurological symptoms, the injections should be every eight weeks based on advice from the British Neurological Society.

However, I keep reading of people, including administrators self injecting - daily and, in some cases, more than once daily!

Is the advice about eight week injections simply a statement as the best one can get from an NHS GP and that, really, one needs much more frequent injections which the NHS will not sanction?

My present twelve week sequence ends on the eighteenth of April - I had five days of symptoms two days after the injection and now - nine weeks after the injection, I am having further multiple symptoms.Originally, I had multiple symptoms which more or less ceased once the injections began. My signature symptom which has persisted is a form of absence seizure which comes without warning and lasts for about ten seconds during which I have tinnitus- sounds like an old valve radio caught between stations - and ends in a euphoric dream like feeling followed by mental confusion which lasts for about twenty seconds. I am a bit unsteady afterwards for a while.

This signature symptom has reduced dramatically and I now only really have the absences seizure which lasts about five seconds.

I am making the assumption that my condition is improving (wishful thinking?). I tend to get one day when I have about five events and then the number diminished over five/six days.

I have given up asking my doctor for help and the nurses who provide the injections simply look at me as if I am make no up my symptoms.

Any views?

[Lisahelen]

It depends on the individual dr i think. Mine will only give quarterly but my friend has his every three weeks. Different surgery, different dr, different practice but both within the same ccg area.

Some gps are responsive to being informed but others certainly are not, hence, i suspect the need for so many people to ‘go their own way’.

You will see posts where people are congratulated on having a gp, neuro or heamo who understands and advocates increased treatment- it shouldnt have to be like that but it certainly is!

Treatment should be led by symptoms not the dreaded blood count numbers.

[JanD236]

As I understand it, the advice to have injections either 2-monthly if neurological symptoms or 3-monthly otherwise is not backed by any research showing these to be the best treatment regime.

Originally injections were given monthly, then the guidelines changed to 2 monthly and then to 3 monthly.

Martyn Hooper’s book ‘What you need to know about pernicious anaemia and vitamin B12 deficiency ‘ is a useful read. It also mentions the fact that some people are fine with relatively infrequent injections and some are not. The reason for this is not as yet known.

[Alfabeta in reply to JanD236]

Thank you for your response. I am amazed at how much ignorance I have encountered with the medical professionals that have been presented by me with my condition - they do not admit their ignorance- quite the opposite! They have all been adamant that my symptoms have not been caused by b12 deficiency but they have not offered me any other treatment. One doctor I spoke to on a telephone advice line who was presented as a specialist on b12 started to take me down the route of schizophrenia, depression etc. It has got to the point where I do discuss my b12 deficiency with my doctors or nurses and just accept the injections.

Thank you so much for response.

[Gambit62 Administrator]

the guidelines in the UK are produced by the British Committee for Standards in Haematology but can be found on the BNF (British National Formulary) which provides the go-to- resource for prescription medication in the NHS

These guidelines lay out the standard practice in the UK for diagnosing and treating cobalamin and folate disorders in the NHS and the standard practice for treating B12 deficiency caused by an absorption problem in two circumstances -

injections are 1mg hydroxocobalamin administered intravenously.

no-neurological involvement: 3x weekly loading shots for 2 weeks followed by 3 monthly maintenance shots

Neurological involvement: 3xweekly loading shots until symptoms stop improving followed by 2 monthly maintenance shots.

Different countries have different treatment protocols.

In the UK hydroxocobalamin is licensed for use in maintaining B12 status with a frequency of 8 weeks - this is down to the vagaries of the processes for licensing and doesn't mean that more frequent injections would be dangerous. In Germany the patient leaflet that comes with vials of hydroxocobalamin suggests monthly for maintenance shots.

Whilst B12 is a prescription only medication in the UK it is an over the counter medication in other countries, including a number of European countries. Within the EU there is legislation that allows citizens to import medication for personal use if that medication is not available locally. This enables people in the UK who find that they can't get GPs to agree to perscribe B12 with the frequency they need it to source B12 from on-line pharmacies outside the UK - and injectas they feel they need to inject.

Most Administrators on this forum are volunteers rather than volunteers. We manage our PA as individuals.

Some GPs are much more aware of how B12 works and are willing to agree to more frequent administration of B12 to their patients. Unfortunately these individuals are the exception rather than the rule.

This is a link to the guidelines

onlinelibrary.wiley.com/doi...

[Alfabeta in reply to Gambit62]

Thank you, Gambit.

[Curlygal in reply to Gambit62]

What's going to happen when we leave the EU? Will we still be able to import our B12, has anyone looked into this?

[Gambit62 Administrator in reply to Curlygal]

I really don't know - it depends on what exactly of EU law gets repealed when we leave the EU. I don't know if patient groups are lobbying government not to repeal this element of the legislation.

[Wowo23]

I can only go by my experience with PA and it seems most docs do the loading does and then go monthly or longer. My b12 was 93 and IF close to triple digits. My primary started me on daily jabs for a week then one a week and then wanted to go monthly. I was lucky that I was also seeing an oncologist that said no way. At that time my b12 was staying around 600. My oncologist reminded me that it's only a stable level because of my weekly jabs. I now take 2 shots a week because I was feeling symptoms after 3 days. I asked for the extra jabs which I do at home. I believe that as long as you have symptoms, you should be able to get what you need. I kept a journal and list jab schedule and when symptoms return. I was able to see that I did fine for a few days then had symptoms a few days before next jab. Now I do my jabs every 3 1/2 days. I hear this so much and I hope things change and ppl can get the b12 when they need it not just by some one size fits all chart

[Alfabeta]

Thank you for your response. My doctor and the surgery generally seem to have a policy of only allowing 12 weekly injections. They claim my symptoms are not b12 symptoms yet refuse to offer any further investigation!

What can one do?

[Plucky1976 in reply to Alfabeta]

Self inject! I was in your shoes for 3 months before anyone gave me an injection. The first doc wanted to give me weekly injections for a month and then once monthly. I had neurological symptoms and I swear if it had gone on any longer without treatment I would've ended up on the psychiatric ward heavily medicated. I did my own research and found this site and then told my internal medicine doc that if he didn't agree with treating me aggressively then I would do it myself. He did say he was perfectly fine with it and so I will continue with 3 injections every week. It has been approx 3 months now and if I take them any further apart I have a return of some symptoms. I'm glad I didn't wait until it was too late and irreversible. Do what you need to do to feel like yourself again. Life is too short

[stillwelljo]

Hi I am the same as you dr will only do jab every 12 weeks I am going for mine today I do need it I am having trouble with my eyes feel like I am going mad and everything else that goes with it.