B12 injections - How long before you have relief?

[AshlingMC]

Hi just wondering when people started to feel better after taking b12? I’m currently on loading dose, 2 injections a week for 5 weeks. Have lots of neurological symptoms

[clivealive Forum Support]

Are you in the U.K AshlingMC ?

The protocol here is loading doses on alternate days "until there is no further improvement" according to the N.I.C.E Guidelines.

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

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Suzibelle]

Hi AshlingMC

Length of recovery seems to be related to how long you've had the problems and how severe the damage. In my case it took three or four months to start feeling vaguely normal and almost a year to get back to somewhere close to what I was before the diagnosis. Reading a lot of the stories on here I know I was lucky to be diagnosed and put on appropriate treatment fairly quickly but, looking back, I think I'd been getting symptoms for a few years before it got bad enough to go to the doctor. We're all different so just hang in there and keep pushing for appropriate treatment. Also, be aware that you'll probably feel worse before you feel better but also be aware that you WILL feel better once your treatment kicks in.

All the best.

[Hanneke12]

It takes a while, and many people including me felt worse for some weeks before getting better. But please be patient, even though the waiting seems unbearable, especially now that you found a treatment. This IS what is needed, and you will feel better. I hope all your symptoms will fade and there is no lasting damage. You will know in a few months. Just don't let the doctors tell you to stop injecting before you stop seeing any improvements. And then, still get maintenance shots when you feel weaker again. Ok?

Also, there are many posts with the same subject on this forum. It might help you to search for them and read them. They are comforting.

Hang in there!

[AshlingMC]

Thanks for the reply. I’ll hang on in there and hope for improvement. Is it common to have muscle weakness and stiffness?