Still trying to get injection frequency right

[Hologram]

I'm still struggling to get my injection frequency right. I live in Portugal and I'm having Neurobion injections that contain 1mg cyanocobalamin plus B1 and B6. I had a loading dose and now I'm on monthly injections. However, the package leaflet says the follow-up dose should be 2-3 ampoules per week after the loading dose.

My latest blood test shows I'm back within normal range just about. Despite this, I get symptoms returning about two weeks after each monthly injection (pins and needles, difficulty concentrating, very low energy, palpitations, unexplained aches and pains). I'm trying to stick to monthly injections, but sometimes I only make it to three weeks before I cave in and get another one.

I'm going to be switching to a 10mg cobamamide formulation soon, that my doctor reckons I'll only need every two months.

Any thoughts, experience, advice?

[Gambit62 Administrator]

not convinced personally by your doctors recommendation - the rate at which you lose B12 is greater when the levels in your blood are high.

I'd also be a bit concerned about the B6 - would be better to be just on a B12 formulation. You can overdose on B6 and the symptoms include neuropathy - you can't overdose on B12 so would be better just to be taking B12 - and then there wouldn't be any issue with taking the injections at the frequency that you need, ie when the symptoms start to come back

[Hologram in reply to Gambit62]

Thank you Gambit62. Unfortunately there only appear to be two formulations available here in Portugal at the moment. My doctor didn't want to use the combined B12+B1+B6 formulation in the first place, but it was the only one he could find until recently.

So I guess when I switch to the B12 alone that at least gets rid of the B6 issue. Then I'll just play it by ear as to how long those ones last. I'll also talk to my pharmacist too because when she was checking their stocks of the new injection it seemed like there were different doses - so maybe a lower dose than 10mg, but higher than 1mg is something to explore.

Such fun not!

[Gambit62 Administrator in reply to Hologram]

if there is a 1mg then I'd go for that and then take it at the frequency that you need. Going for a higher dose is likely to be less efficient - ie taking 10mg once a month is 5x taking 1mg twice a month. The botheration factor is any medical time administering the dosage. If you can get them to show you how to inject then the cost of that time won't be part of the equation.

[Hologram in reply to Gambit62]

Thank you Gambit62. Really helpful advice - much appreciated.

I'll ask if there is a 1mg B12 only. Luckily the time isn't too much of an issue as my local pharmacist does my injections and I'm usually in and out within 5 minutes. Not sure I'm brave enough for self-injection right now, but I will probably consider it in the future.

[clivealive Forum Support]

Hi Hologram

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

(and envy your sojourn in Portugal)

[Hologram in reply to clivealive]

Thank you clivealive. My folic acid blood test result was 6.4 ng/ml right from the start, so OK for the reference level here (> 5.4). I haven't had it tested since, so will ask for it next time to keep an eye on it.

[Hologram]

Thank you Eaoz. That's good advice. I have prescriptions for both Neurobion and the 10mg B12 only injection so I have options.