8-weekly injections do not seem to0 l... - Pernicious Anaemi...

Pernicious Anaemia Society

31,915 members23,044 posts

8-weekly injections do not seem to0 last anymore

slimbone profile image
4 Replies

Hi all, I have been having 8-weekly injections for the last year or so having fought to get them from 12-weekly. My practice say this is the most frequent I can have. I am now finding that after about 2-3 weeks I start becoming vague (according to my observer(partner)) and my hands start to cramp. I have been supplementing with sub-lingual after 2-3 weeks, when the symptoms appear, and the "recovery" is "miraculous" with symptoms disappearing within the first day of supplement. Is this usual? Can I get sub-lingual tabs on the NHS? Why is this happening?

Written by
slimbone profile image
slimbone
To view profiles and participate in discussions please or .
4 Replies

Hi slimbone ,

As you may have read here many supplement with extra B12 in what ever form suits them. Why you may need more and why certain supplements help you is not known. It may be that methylcobalamin suits your body better as you may have a problem some where converting the injected B12 and or you loose a lot of the injected B12 etc. We all are so very different wioth such very different problems, I have an explanation why I do not hang on to the injectewd B12 much as my terminal ileum is smooth and that is the section where bile (containing B12) is recycled in the body. But there are so many other pathways that could be faulty. Very diificult to find out. But in the mean time just use what ever helps you, it can do no harm.

You will see from the below link that many people have a problem with the standard treatments, but at this time it is just brushed under the carpet; see:

theyworkforyou.com/wrans/?i...

Kind regards,

Marre.

Polaris profile image
Polaris

I'm so glad the tablets are working for you. As Marre says, it seems to be trial and error as to what works best for each person. My sister has been supplementing between injections as she is desperate to recover her memory and resolve other neurological symptoms. We have both tried various tablets, sprays, etc. and found Jarrows 5000 mcg cherry flavoured lozenges the most effective so far - her numb and tingling toes, glossitis, etc. have improved and she is able to last longer between injections. Initially, she was prescribed tablets by her GP but not methylcobalamin, so is delighted that these seem to be so effective - other reviews on Amazon seem to confirm this for many people.

Secondchance profile image
Secondchance in reply to Polaris

I can confirm Jarrows 5mg better for me than previous 1 mg tablets.

Gambit62 profile image
Gambit62Administrator

I find that my symptoms start to return within 24 hours of a maintenance shot.

Nasal spray works well with me as form of supplementation but I also inject sub-cutaneously at times.

There was a study in the 1960s that showed that on average hydroxocobalamin is retained twice as long by people as cyanocobalamin but also showed that there was an enormous variation from person to person and for some it was actually retained for much shorter times. However, this isn't something that is reflected in the guidelines leaving GPs to assume that one-size fits all, when there is considerable evidence that it doesn't.

You most definitely aren't alone.

You may also like...

8 weekly injections

hi, I have written to gp to try and get injections every 8 weeks instead of every 12 weeks - if I...

Don't know what to do anymore

So I have PA and have done for the past 20+ years due to having a large portion of bowel removed...

Do these blood results seem OK?

many of the symptoms we all know. The 9 weekly cycle kicks in in 4 weeks' time. I have started on...

High B12 in blood 8 months after last injection

to send me for a blood test after I had been having monthly B12 injections. I tried to explain it...

Self injecting B12 do we have to inject more if under stress!

is I have just started self injecting and the charity doctor who is helping me out said to inject...