B12 treatment progress advice - Pernicious Anaemi...

Pernicious Anaemia Society

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B12 treatment progress advice

GC010
GC010

My b12 treatment started more than 3 months ago. First 10 injections in 2 weeks as loading dose. Followed by 2 weekly injections for 2 months. Since 3 weeks the dosage is lowered to 1 jab a week. I made some good progress over the last months. However, the recovery process stopped and some symptoms became more worse over the last two weeks. Do you think this is normal in the healing process and i have to be more patient or do i need more regularly injections? Most of my co-factors levels are fine and i have been deficient for approx. 5 years. Thanks in advance.

11 Replies
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Ate you having g hydroxocobalamin b12 injections? They are suppose to stay in your system longer. I think it's a roller coaster. I'm on 2 weekly and have been for 10 weeks now from every other day in January slowly going longer. I'm back in bed today. Last injection was Wednesday. Headache all day yesterday and completely knocked out today. I think if you try and keep a log. I find the smallest of activity like getting to the surgery or going for a very short walk alters things. It's all very frustrating I find and doesn't go in a linier line. I would wait until next injection and see your reaction. This is only my opinion as every one is different. You know your body.

IMINHIM
IMINHIM in reply to Nackapan

I think the hydro is a manmade product----stay away from that---in my opinion-----good luck

Nackapan
Nackapan in reply to IMINHIM

So what form do you take?

IMINHIM
IMINHIM in reply to Nackapan

methyl cobalamin

Foggyme
FoggymeAdministrator in reply to IMINHIM

IMINHIM. For clarification...ALL forms of oral and injectable vitamin B12 are 'man-made' (Hydroxocobalamin, methylcobalamin, cyanocobalamin and adenosylcobalamin).

There's no reason why hydroxocobalamin should be avoided!

Hydroxocobalamin is the form of injectable B12 prescribed in the UK for those with PA and B12 deficiency. Methylcobalamin is not licensed for prescription in the U.K. - those who wish to try this have to source it elsewhere - it's less stable and much more expensive then either hydroxocobalamin or cyanocobalamin.

👍

IMINHIM
IMINHIM in reply to Foggyme

thank you for the correction-----I DID NOT KNOW THAT--!!!!! ALL FORMS----in my reading I was told that the myleo was the good one---I presumed all natural----ok then thanks again----

Foggyme
FoggymeAdministrator in reply to IMINHIM

No problem IMINHIM 😉.

Yes...much nonsense on the internet about methylcobalamin being the 'best' and only 'natural' form of cobalamin. Quite often put there by those selling it!

Here's a link to research information about cobalamin types:

ncbi.nlm.nih.gov/pmc/articl... (No Superior Forms of Cobalamin)

The majority of people do well on hydroxocobalamin, a few (like Clivealive) do better on cyanocobalamin, and a few do better on methylcobalamin. So cobalamin type is very much an individual thing...what works is what works best for you (and what's available and routinely prescribed, depends on the country you live in).

So, theoretically, all cobalamins are equal. Nobody really knows why some feel better effects with one particular form over another. And it can be a case of trial and error to see what suits best.

I started on hydroxocobalamin, decide to try methylcobalamin, then went back to hydroxocobalamin.

Some people (me included) do react badly to methylcobalamin.

👍

IMINHIM
IMINHIM in reply to Foggyme

INTERESTING-----CAN YOU tell me what blood tests you use and what numbers you are shooting for-----I found a video of 4 people who were b12 ddeficient in a bad way and nursed themselves back to health one was a doctor who was on his death bed----and their protocol seemed to be 1000 mg daily for 1 week---and then on once a week---1000 mg until symptoms disappeared-----the doctor who was on his death bed fully recovered---except had to walk around with spider crutches -----

Foggyme
FoggymeAdministrator in reply to IMINHIM

Levels of B12 in the blood are meaningless for managing and monitoring treatment once injections have started. So...no testing required once treatment has commenced - as per the BSH, BMJ and NICE guidelines). Symptom management is vis tracking and monitoring symptoms, starting with the intensive regime of injections (as below) and then aiming to inject frequently enough so that symptoms don't return between injections (the frequent will be different for each individual).

In the UK, intensive treatment with B12 injections for those with neurological symptoms is 1mg Hydroxocobalamin every other day until, no further improvement. Other countries may use different protocols (probably as per the videos you watched).

IMINHIM
IMINHIM in reply to IMINHIM

I have since been told all of the b12 products are manmade----when you talk about b12 injections are you taking 1000 mcg.s ????? are you having any neurapathy---nerve pain----????? and what are your symptoms-----could be a low vitamin d3 and also magnesium-----I learned about this the hard way---- forget doctors they do not believe or want to believe in a natural cure----you need to find a really good homiopath-----and I think b12 alone is not enough ---you need the full range of b vitamins-----b6, b1, so take the whole range (they also have a shot for that----) are you on any medications---that can affect it------look forward to hearing from you garey

GC010
GC010 in reply to IMINHIM

Thank you!

Yes im taking 1000 mcg hydro, i want to add Adenosyl next week.

Yes i had Some nerve pain, other symptoms are:

- joint pain / musscle weakness

- shortness of breath / ashmatic

- psychological problems

- hair loss

- loss of smell / taste

My vit D3 is too low, level was 45 one month ago. I’m now take 3.000 IU a day and try to catch some sun.

I think my magnesium is fine. Long history of taking this supplement.

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