Taking control of PA in Australia - Pernicious Anaemi...

Pernicious Anaemia Society

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Taking control of PA in Australia

Vk7GOD profile image
10 Replies

More of a statement here. In Australia we don't have "loading doses" the words don't exist.

Instead when we are diagnosed with PA we are usually put on regular injections of B12

Most of us then recognise that we need to SI and often

Then we take control by getting our supplies legally and readily from pharmacists.

For me it's SI every 4 days so that I stay on top of my symptoms, however it did take about 6 months from diagnosis before I recognised my personal situation

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Vk7GOD profile image
Vk7GOD
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10 Replies
Nackapan profile image
Nackapan

All sounds so sensible .Thanks for telling us.

Hope you are keeping as well as possible on your regime.

Sleepybunny profile image
Sleepybunny

Hi,

I'm in UK.

It's always interesting to hear how PA and B12 deficiency are managed in different countries around the world.

Are there any support groups in Australia?

Do states/territories have specific guidelines on treatment/diagnosis of B12 deficiency?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members from other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Sleepybunny profile image
Sleepybunny

I searched online for "treatment of pernicious anaemia Australia" which showed some links that might be useful.

wedgewood profile image
wedgewood

interesting to read of what happens in Australia. Great that you can get your B12 ampoules over the counter . In U.K. we can’t unfortunately . We get our supplies from very good German online pharmacies . We can obtain needles and syringes easily though . What form of B12 is used in Australia ? Is it hydroxocobalamin like here in UK? Thank for the information. Best wishes from U.K.

Suzibelle profile image
Suzibelle in reply towedgewood

Hi Wedgewood

It's hydroxocobalamin over here. Don't really hear much about the other types.

wedgewood profile image
wedgewood in reply toSuzibelle

Thanks for that . I’ve tried Cynocobalamin and Methycobalamin as well in my my desperation , but i have to say that Hydroxocobalamin suits me best You seem to have good doctors over there in Australia. . My GP is more than disapproving I was told that too much B12 was TOXIC !No answer when i asked how much was toxic . Of course woukd not show me how to self inject . . .. So i’m on my own .

👍👍👍

Curious123 profile image
Curious123

I was given 3 loading doses within 2 weeks when diagnosed in Australia then moved to 3 monthly. Then in the UK I had to see a neurologist to be allowed monthly. However in Australia you can by B12 hydroxocobalamin OTC where as it is script based only in the UK so I feel it is less of an issue. Both my Australian and UK GP showed me how to do the injections myself so I just take control of it myself. However in the UK I inform the practice each time I give my injection.

Suzibelle profile image
Suzibelle

My initial treatment in Queensland was similar to NICE guidelines - six injections over two weeks, then another six every couple of weeks and then onto three monthly, until I started to bring them closer together and settled on every seven weeks. My original doctor was from Sri Lanka and seemed to have a good handle on it, including having no issue with me experimenting on the timings but that all went to pieces when an English-trained doctor interfered and told me I couldn't have any more than every two months. At which point I started SI, having been shown how by a nurse in the clinic at my work site. My last doctor at the original clinic (also Sri Lankan) just told me to go for it whenever I needed it. Since I've moved away I've had one discussion with the doctor at the new practice, who tried to throw the term 'B12 toxicity' at me, only to be told not to be silly as we both knew full well there's no such thing, and he's been fine ever since! Guess I've been lucky.

MoKayD profile image
MoKayD

Australia sounds very enlightened when it comes to B12 deficiency treatment. Way to go Australia!

RobMcGinley profile image
RobMcGinley

I've just been diagnosed and my GP wants to do quarterly with no loading dose.

Great to know it's over the counter here as he does not appear to know very much

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