injection frequency

[Laundretta]

Hi All

Just double checking something. I’ve been self injecting using cyanocobalamin from Spain, using their treatment protocol of once a month after the loading dose of 11 injections over 3 weeks. I’ve been doing this for about a year, dosage seems fine, I’m usually ok at a month but feeling symptoms after 6 weeks if I leave it.

Recently changed over to hydroxycobalamin (from Germany)

Standard NHS protocol for this is every 3 months isn’t it? Is this because the hydroxy lasts longer or because the NHS is so cash stripped?

Thanks in advance!

[fbirder]

Hydroxocobalamin should last longer. You could try extending your injection frequency until you find the right regimen for you.

[Laundretta in reply to fbirder]

Thanks

[Nackapan]

Standard maintenence of NHS hydroxocobalamin injections is now 2-3 months. It's supposed to stay in system longer and be stable.

Hope you find a regime to suit your needs.

[Laundretta in reply to Nackapan]

Thank you

[Nessy50]

If you have neuro symptoms it’s every other day until symptoms stop improving. My symptoms are bad so I do that at least

[Nackapan]

Yes . I've managed to get 2 weekly on prescription but have them weekly at present.

[Nessy50 in reply to Nackapan]

That’s great I was on that years ago but they weren’t putting me on that so I’ve done my own for years. Depends on surgery I know others who get two weekly

[Nackapan in reply to Nessy50]

Yes so glad have own supplies now. Mine were never stopped but the threat was enough. How often do you need to inject?

Hoe many years are you on?

I'm 20m in and still trying g to function where thers a will theres a way. Pushing sets me back though.

I've got to stop comparing what I used to be like. When restrictions lift I trally wa t to see one of my daughter new house it's only 40 .miles away

She moved on September not got there yet.

[Nessy50]

Sorry for late reply. My stories a long one, I’ve got Coeliac so why I need injections, been doing them about 4 years I think & take folic acid, odd iron because it was pretty good last time & Vit D because it was low. I’ve read Sally Pacholocks book & lots about B12d from groups & Traceys site. Are you on any groups? I’ve got bad neuro symptoms so about 5 a week. I’m the same some days do too much & have to have a lazy couch day but heaps better than I was without jabs, they’ve saved my life. That will be great to get to your daughters new house.