Can I repeat loading doses? - Pernicious Anaemi...

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Can I repeat loading doses?

patmackfin profile image
11 Replies

Since being diagnosed with PA in february I received 6 weekly loading injections and am lucky enough to be on monthly maintenance injections.This works out at 5 weekly really.Last month I really went down after 3 weeks and didn't feel better until a week after my injection.

I am so happy now as I just started self injecting on Friday and did one on Saturday also.My skin is terrible but my back pain ,neck pain and headaches etc are soo much better.

My question is can I repeat my loading doses myself to get my b12 up? say daily for a week then weekly? Is there any reason not to? I've read I should eat more bananas for the potassium and take extra folic acid to aid absorption.

Any advise is appreciated.I am starting to feel like my old self again. ( :

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patmackfin profile image
patmackfin
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11 Replies
curios profile image
curios

I was advised every 2nd day injection until stop noticing improvement, so this could go on for some time. It's water soluble so if you don't need it if will be released by the body. Glad your feeling better, what a relief!

mikeg71 profile image
mikeg71

Just to reinforce what curious said ............. Load away my friend.

There is no reason at all why you shouldn't reload. It is perfectly feasible that your regular injections didn't maintain your B12 at sufficient levels resulting in you running low over a period of time.

After reloading perhaps you could think about injecting every three weeks rather than every five to stop this deficit occurring again.

B12 maintenance is such a personal journey. There are no difibitive rights and wrongs. Just be secure in the knowledge that you can not overdose and that once your self administration regime is perfected your life will be enhanced immeasurably 😀

mikeg71 profile image
mikeg71

* should read "definitive" sorry

patmackfin profile image
patmackfin

Thanks guys, I just needed a bit of reassurance I suppose.

I finally feel like I can plan ahead again and not be at the mercy of this illness or the doctors. Yipeeee!

Thanks again

curios profile image
curios

Yes it much less stressful administering your own b12. No hassling anyone, easy peasy, get on with your life!

spiffer profile image
spiffer

I have only recently been diagnosed with B12 deficiency and information is scarce. so, went online and was amazed at the other symptoms that can exist. Actually not surprised - bloody alarmed.

Everyone with this problem absolutely has to read - b12deficiency.info/what-to-...

Especially the part that discusses the number of shots you can have. It appears there are people who are in agony or totally debillitated by this problem and are forced to have just one jab every 3 weeks. This article talks of people who have forced the issue over frequency and now lead normal lives whilst having the injection weekly, and as they say the jab only costs 55 pence a shot.

A no brainer

patmackfin profile image
patmackfin

That's why I am taking matters into my own hands.I was only diagnosed in February this year.I'd been having symptoms of varying degrees for years.I kept insisting on blood tests to try to get an answer.My b12 and folate went down from the 2011 blood tests to the 2013,but no one passed any heed until my b12 went to 174 (feb 2015).They go by the book/law,not by the patient.

In my limited experience,they know very little about b12 and it's effects.I pay 35 euro here in Ireland for my monthly shot,(that I cried and fought for) which isn't very expensive considering,and I will keep attending monthly as well as doing weekly shots at home.I don't know if I will even mention it to the nurse.I have been keeping a log for myself of my symptoms,I will show the doctor if I ever have to.It's self explanatory,and backs me up I feel.

I feel so bad for the people in the UK at the mercy of the NHS.They need to take their lives back and self inject,it's so easy (and liberating).

I couldn't cope without this PA society or my PA/B12 deficiency support group on Facebook...you guys have saved my life .

..so THANKS everyone ( :

DBee profile image
DBee in reply to patmackfin

patmackfin, thank you for this and your other posts. I was just told last week that my B12 was "a little below normal" at 193 and today I had the first of my 6 loading doses. I was told I will be on a maintenance dose of 1 every three months and then the nurse said "don't expect this to help you, your B12 is actually quite high".

I have made an appointment to see my GP as he knows how ill I have been for years (Diagnosis of CFS and last year peripheral neuropathy - waiting on tests for early onset dementia!).

I have been hunting around online all night - can you advise where in the UK injection vials can be legally purchased from?

Thanks again

DB

Gambit62 profile image
Gambit62Administrator

There are no known downsides to having high B12 levels from supplementing so go for what helps you.

Your potassium levels can be a bit depleted when you start have B12 - though that generally applies if you are also anaemic - banana is a good source of potassium.

With neuro symptoms the recommendation is maintenance shots every other day until symptoms stop improving - BCSH recommends a review at 3 weeks on this dosage but that is about practicality as some people do find that it takes a while for things to start improving and there can also be other things going on that mean symptoms may not actually be B12 - but as others say - just go for it - its what I did

Yes, also a good idea to keep an eye on folate levels - best if you can do that through diet - but if not then methlylated forms are best - there can be some side-effects from high B9 levels.

Be wary of B6 if taking a B complex - doses over 100mg per day over several months have been linked to neurological problems - and there are cases where this hasn't reversed.

patmackfin profile image
patmackfin

Thanks for that Gampit62, always so helpful

patmackfin profile image
patmackfin

DBee,

As scary as it is to be diagnosed,at least you have an answer. After my loading doses I asked my nurse"what happens now?" and she said something along the lines of "we will probably test you now and again,you are mended"...so to speak.In my case the nurse knows EVEN less than the Doctor.

I am part of a closed facebook group called Pernicious Anaemia/B12 Deficiency - Support Group.They have been in valuable to me,sounds dramatic but really.

They have a file section at the top that tells you where to source the supplies.I have made friends with one woman in particular who walked me through every thing.

Here's where I got mine:mycare .de and medisaveuk

and the supplies:

1. B12 Hydroxo 1ml/1000µg I'm using the Rotexmedica brand, Vitamin B12 Depot Hydroxocobalamin

2. Alcohol wipes to clean where you're going to inject

3. 2ml syringes medisave.co.uk/b-d-2ml-plas...

4. One needle to draw up B12 into the needle. If you're using the longer needles for IM, then you could just buy one size needle, just don't forget to switch to a new needle to inject.

5. to inject intramuscularly But will need 23G x 1.25" for IM

medisave.co.uk/b-d-microlan...

6. You'll need a sharps box as well to dump all the empty ampoules and needles.

I hope this all makes sense,

I also watched a couple of videos on youtube of people injecting their thigh.It really is so easy.

Best of luck !

we are all here for you if you need us.

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