Treatment in the Netherlands - Pernicious Anaemi...

Pernicious Anaemia Society

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Treatment in the Netherlands

fbirder profile image
9 Replies

I was just exploring the new PA site and I came across this survey on the Stichting Tekort site. It looks at the diagnosis and treatment of 1500 patients (presumably Dutch).

The amazing thing was that, after loading doses, almost 60% of those receiving injections were getting them once a month, or better!

stichtingb12tekort.nl/surve...

Perhaps this should be mentioned to doctors who are reluctant to prescribe anything more frequent than every 3 months.

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fbirder profile image
fbirder
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9 Replies
scorpiojo profile image
scorpiojo

Now you are cooking with gas 😊

clivealive profile image
clivealiveForum Support

I read that a couple of weeks ago and was amazed too fbirder - perhaps we should all "go Dutch" :)

Softpaws profile image
Softpaws in reply to clivealive

too late - we're leaving Europe! Wonder how that will play out for those of us buying our b12 from Germany etc.

Gb57 profile image
Gb57 in reply to Softpaws

Oh what a thought! Can't function without my ampules

jillc39 profile image
jillc39

oh PA is so HORRIBLE and from reading these posts so many gp's in the UK just wont budge on frequency of injections - I am so very tired to fighting.

Lazydaisy22 profile image
Lazydaisy22

I was told very firmly by my GP that B12 injections are only licensed to be given 3 monthly.

fbirder profile image
fbirder in reply to Lazydaisy22

That's almost true.

In the UK B12 injections are licensed for use 3 monthly for those with PA and no neurological symptoms. For those with such symptoms it's licensed for use every 2 months.

For some other conditions it's licensed for use up to monthly.

However, it is fairly common for doctors to prescribe off-label (i.e., not within the terms of the license). This is especially true when treating children as many drugs are only licensed for adults.

This is the case with B12. So a doctor treating a 15-year-old with PA would have to go off-label.

Lazydaisy22 profile image
Lazydaisy22

Oh thanks for that info, that would be why she keeps telling me the pins and needles in my arms and legs are nothing to do with PA. I expect the Atrial fibrillation I now have is random as well. At least I have to see a Cardiologist for that.

ritario profile image
ritario

Brilliant find fbirder!! Have added it to my favourites for future reference. Thanks for sharing.

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