How long I should stay on b12 Eod injections?

[Kat_88]

i am on Eod self-injecting for almost 2 months and half ( first cyno and then hydro) I was wondering how long i need to continue Eod SI since i feel the progress in symptoms’ improvement got very slow!!!Any similar experience?

[Asselchen]

Until symptoms are gone and stay gone, which can take up to about two years or even longer.

[jade_s]

It's not abnormal to 'plateau' in the early days, but often symptoms will continue improving if you continue. Some of us continue EOD indefinitely because symptoms return if we reduce. Hopefully you'll be able to reduce eventually, as many do.

Remember to check folate levels and/or take some additional folic acid/methylfolate/folinic acid. B12 requires folate to do its jobs, and taking high doses of B12 can sometimes deplete folate, if there's a lot of B12D repair work to do. Some people take a B complex.

[Kat_88 in reply to jade_s]

thanks, well for me it all started with high level of folate and low level of b12, as I am a minor thalassemia, tge hematologist prescribed me folate 5mg/7days a month without checking my b12! After a few months symtomes started and worsened over time. Now I still take folate 5mg/7 days a month and b12 injection eod ( of course my GP would’d give me) but not sure the balance is good enough!!! What is the minimum dose of folate when on b12 injection? Which form of folic acid you propose as I know I do not take the active form!

[Bellabab in reply to Kat_88]

I suggest you increase the amount of folic acid you take - also make sure the folic acid is kept in the dark. The recommended daily dose for women is 400 micrograms (mcg), or 0.4 milligrams and thats before that needed because you are injecting EOD. I need at least 2.5 mg folic acid a day.

[jade_s in reply to Kat_88]

Minimum dose is probably 400mcg but it is all so individual. I need 5mg a day but the conventional wisdom here is that most people don't need that much, or only on doctor's orders.

I used to take only folic acid (despite MTHFR) and did fine for a long time. Now I take a combo of folinic acid and folic acid because the latter sort of stopped working for me. Methylfolate is also fine but it's more expensive. Well the folinic isn't cheap either. I would just say trial and error really. May people do quite fine on standard folic acid (despite what all the MTHFR fear mongering websites say).

[Kat_88 in reply to jade_s]

but I guess my body reacts to excessive dose of folic acid as my symptomes all started with high folate and low b12 and as I read high folate mask b12 defeciency! I knew i was sufficient in b12 for some time but after taking folic acid my neurological symptoms started and lasted for a time ( I had no idea what is going on)! I guess I will continue 400 normal daily intake for a while as I am high and my body will save it! And space-out my b12 injections. And see how my body reacts!

[jade_s in reply to Kat_88]

Indeed, trial & error! Trust your instincts. Get folate tested periodically. Keep a daily symptoms log. Change only 1 thing at a time and stick with a change for at least few weeks before changing again. Changes in folate can take 2 weeks to see an effect (in my experience).

It can take a while to figure things out, and the more you recover the easier it will be to figure out what works and what doesn't , at least that's what I experienced.

Good luck!

[Gambit62 Administrator]

general rule of thumb is 'until symptoms stop improving'.

Please note there is no guarantee that neurological symptoms will always resolve.

Keeping a diary of symptoms and changes may be a helpful reference.

[Kat_88 in reply to Gambit62]

Thanks, you’re right, I am not still ready for even exercising and when I do, symptoms get back and I experience pins and needle and muscle sore when I hav a overwhelming/stressful day!its not linear process at all

[Mixteca]

Also ensure your iron levels are good as B12 treatment will place more demands on your iron stores. Mine have been consistently low for years and are impacting on the effectiveness of my B12 injections.

[Kat_88 in reply to Mixteca]

thanks for mentioning! Last time I checked was normal! But i will be careful

[Mixteca in reply to Kat_88]

I'm very wary of 'normal' test results - according to who? Always best to post results on here unless it is a very good level.