Out of curiosity I have just used an app to translate the sheet that comes with the German hydroxy b12 ampoules. Section 3 tells you how it should be used.
It states the follow up dosage is 100ug every month ie 1/10th of the 1000 ampoule used for the loading doses. I assume it is a typo ? Is it in the English sheet ..does anyone know?
It won’t change my useage but not helpful as I am trying to prep for explaining to a new GP about self injections. Her initial question on SI was why was I doing it? I said “necessity” at which point she said “oh” and referred me to the senior partner. He has now referred me back to her. Not sure what to expect at the next appointment.
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Rosydawn
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It’s very interesting that you read the Patient Information sheet. You know yourself what frequency you need. Well, hydroxy with neurological involvement is Every Other Day.
Imagine if someone said, I take 1 gram of paracetamol orally every day and never get a headache. There’s a lot of pharmaceutical drugs that are given as it is needed. It is denoted as PRN - pro re nata.
It really would be lovely, if clinicians were on board. I put in writing, my frequency to the Partner at my practice. I told the lovely Practice Nurse, this is my last appointment with you. My thinking was the appointment can go to someone who’s far sicker than me. I want to save the NHS because my friends and family work tremendous and stressful hours for them. I have worked for them. I personally like candour.
I went through a similar thought process when starting SI, but recalled a comment possible from Martin? …. if b12 patients stop attending nhs practice for injections it won’t appear on their medical notes. Then when research is done on b12 patients medical notes there is nothing to see and everyone thinks you are cured, cos of course all our other symptoms have nothing to do with b12 haha.
Consequently I took a deep breath and informed my surgery I was self injecting and insisted it went on my notes. I also explained that I would continue to have my nhs jab which would also be on my notes thus ensuring a full injection history. My GP’s response at the time was to keep taking the antidepressants and I would not need to SI.
I have since stopped the antidepressants and kept up with the injections.
Yes, Martyn is correct, I’m a qualified midwife and previously was a civil servant so have just audited my notes. What a very interesting read !!!
I volunteer for the PAS and emailed a particular document of a system within the NHS system to them. However, as an ‘auditor,’ I know about the record’s life cycle. So, somebody created a record that you had depression. From that they deduced that you needed a prescription. Oh that’s another record where the print out of a prescription is a hard copy.
GDPR (2018) has a lot of clout. On my health journey, I have also left an auditable paper trail. As well as, ‘Thank you’ letters for their Continuous Professional Development i.e. ‘use me as a case study’.
Midwives are affectionately know as ‘Rottweilers who wear lipstick’. I lost my job due to misdiagnoses. I was not taught of P.A./B12 but was willing to learn. I was devastated to find out about it.
Lastly, when I found out where they were based, in the words of Victor Meldrew, ‘I don’t believe it.’
An organisation will only ever be as good as its paperwork. 😈
The English Patient Information Leaflet for Panpharma Hydroxocobalamin ampoules is shown under the Accord branding. This is the official, MHRA-approved PIL:
Thank you for the English version I had not made the link between Accord and Panpharma. Each country seems to have variations on a theme. For its patient sheets. The New Zealand data sheets are very informative and specific.
I can get my injectable B12 over the counter in BC Canada. The vials I get have 10 doses. The container has 10,000 mcg (in 10 ml) which means it is 1000 mcg per 1 ml dose. This is 10 times what you are saying. Did you read it correctly? I need injections every 2-3 weeks to keep my toes from getting tingly. People doing loading doses start by injecting every other day until your symptoms subside.
I think that it’s a typing error too ! I will email Panpharma and ask them !
I’ve never bothered to read the instruction sheet before . It was interesting to read that the usual way to inject is I.M. but that sub-cut could also be used.
I’ll let you know if I get an answer on the dosage question .
I’m more than surprised at the answer from Panpharma ! I find it completely crazy ! To think that they are suggesting that one injects a tenth of an ampoule and then throws away the rest . ! .
This might be based on the maintenance RDA for B12 for healthy individuals as 100mcg a month would be roughly 3.3mcg a day. But this would not be accounting for loss of B12 in bile which is often not recovered in those with PA and can be up to 5mcg of additional B12 lost per day.
So I don't think this even meets a theoretical minimum dosage for those with PA. Let alone whether such a dose would really be effective in practice against return of symptoms.
I also think that, since the body loses a tiny bit of B12 everyday, it is not a good idea to try and correct that every month but much safer to top up on a daily or several day frequency.
Terribly wasteful to use a 1000mcg ampoule to only deliver 100mcg and throw away the rest. Blasphemous even! 😁 Wasting B12.... a mortal sin 😁
Hi Rosydawn maybe print off the Nice guidelines on b12 deficiency for your doctors and tell the this us why you are taking the doses you are and that they should read the guidelines as these are dosage recommendations. Good luck
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