NHS injecting and self administration

[butterflyEi]

I had my last injection on 13 April with the nurse in the surgery. This injection is in my upper arm and always hurts. My prescription says hydroxocobalamin. I am also able to buy Cyanocobalamin which I have administered at a pharmacy when I am away. The pharmacist has a gentle touch and I am not aware of the pain so much.

Today my toes are tingling and I have been unsteady on my feet after only 9 days after the hydroxocobalamin.

Can anyone tell me the difference between the two different types of cobalamin and which one is supposed to be better.

Your help is much appreciated.

[Gambit62 Administrator]

cyanocobalamin is cobalamin bound to cyano. hydroxocobalamin is cobalamin bound to hydroxo. cyano tends to be more stable than hydroxo. hydroxo is converted to cyanocobalamin in the presence of cyanide (that, combined with the lack of toxicity of B12 is one reason why it is the treatment of preference for cyanide poisoning.

Generally people retain hydroxo twice as long as cyano but this is just an average and there are people who retain cyano longer than hydroxo. No way of predicting which will work better for you.

Is this the first time that you have used hydroxo? if not, does it usually last longer.

Is it possible that the symptoms you are feeling are related to PBC - not that you are a member of that forum? Sorry don't know anything about the condition.

[butterflyEi in reply to Gambit62]

Thank you Gambit62

Yes I do have PBC but I have never read of anyone having the tingling numbness in their feet or being unstable in their stance. The main symptoms are fatigue and itching but brain fog is now also being recognised. As a rarer disease which is only now being diagnosed at earlier stages more symptoms may be added.

I was diagnosed with PA last year and given a loading dose that is when I found you and this forum. As far as I am aware the UK surgery have always used hydroxo. Previously I have easily managed about 2 weeks. I pop in from time to time and have learned a good deal from you kind folk that is why I thought I would ask for some wisdom from you.

I think I will self inject this morning as I have an ampoule and syringe hopefully that will resolve my issue with my feet and as I was a bit tottery yesterday it will make me less likely to fall over.

thank you for your help.

best wishes

[wedgewood in reply to butterflyEi]

Don't forget you need folate / folic acid as well (vitamin B9) It works together with B12 . Very important !

[butterflyEi in reply to wedgewood]

Thank you wedgewood I did not know that. I take a multi vitamin I will look to see if it contains B9 or folic acid and if not I know where I will be going

thank you

[Gambit62 Administrator in reply to butterflyEi]

did you mean 2 months rather than 2 week when you said 'Previously I have easily managed about 2 weeks. Think everyone will be wanting to join your surgery if you are getting injections every 2 weeks

[butterflyEi in reply to Gambit62]

sorry - not explained myself well. My surgery allows me an injection every 10 weeks but I self inject in between.

[Gambit62 Administrator in reply to butterflyEi]

thanks for clarifying - understand the two weeks is about self-injection.

[butterflyEi]

thank you Hidden

[ljmulledy]

I have been in treatment for PA since 2013 and self injecting cyanocobalamin weekly for since 2015. Do not worry about cyanide poisoning. It is a non factor, seriously. Also, i take folic acid and L-methyl folate which has helped with stability of moods.

[butterflyEi in reply to ljmulledy]

thank you ljmulledy

I was worried about self injecting weekly but with your experience I will have more confidence.