Pernicious Anaemia Society

Newbie in PA - What drugs are you taking ?

Hi guys,

I have just been diagnosed with PA. I am UK based.

My B12 level is 118ng/L (normal range 211-911). Intrinsic factor antibody is 108 u/mL (range 0-24). My erythrocytes are slightly enlarged but still on the border of being in norm. Hemoglobin levels are OK.

I had my first injection of Hydroxocobalamin (1mg) today. Plan is to have it every other day for two weeks and then every 3 months. Is this going to be enough ?

In Poland where I am from you get 1mg of Hydroxy.. every day for two weeks followed by monthly injections.

I was wondering what other treatments other than Hydroxocobalamin injections are people having? Sublinguals , sprays , patches ?

Hydroxocobalamin or Methylcobalamin ?

Could you recommend any suppliers please?

5 Replies
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Hi Dragon2014 here in the UK if you have neurological symptoms loading doses are on alternate days until there is no further improvement and then every eight weeks.

You may need to get your Folate level checked as this and the B12 help your iron to make red blood cells.

google.co.uk/url?sa=t&rct=j...

Click on the link, then on "Management Scenario" and scroll down

I wish you well

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You may need to consider your absorption issues such as gluten/dairy. Additionally, Consider your D, levels. Weight/age issues. Of course B vitamins are also extremely important.

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people vary a lot with B12 - though I haven't come across many people who report being ok on injections 3 months.

clivealive has covered the different regime for involvement of neurological symptoms

which form of B12 suits people also varies - in fact I use several types (there are 4 types that can be metabolised - cyano, hydroxo, methyl and adenosyl. cyano and hydroxo are more stable and adenosyl is the least stable. I also use a mixture of nasal sprays, sublingual (adenosyl) and self injection - sourced from a pharmacy in Germany. If B12 is available over the counter in Poland and you have friends/relatives visiting then you could source from Poland. I get my various sprays from a company called detoxpeople - but many people use well known brands sourced from amazon and elsewhere.

Nobody is really sure where the 3 months used in the UK comes from - most likely is that it is driven by costs (of medical time giving the injections) rather than by good patient care.

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Thanks guys.

I have also found this information on the forum very useful if anyone was thinking about self injecting intramuscularly (IM)

Links to information about needles/ B12/IM injection site:

pernicious-anaemia-society....

Further tips on B12 injections

pernicious-anaemia-society....

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I have done a little bit of research this morning and it looks like majority of people in this forum self inject Hydroxocobalamin from Panpharma Rotexmedica. It is at 1mg/mL and you can get 10 or 100 vials. Panpharma used to be the largest Brazillian wholesaler and it was fully taken over in 2009 by Celesio , a german wholesaler/pharmaceutical company based in Stuttgard. Celesio themselves are now part of McKesson Corporation, USA pharmaceutical distributor.

You can get Panpharma Rotexmedica from german pharmacies i.e:

versandapo.de - versandapo.de/article/detai...

mycare.de -

mycare.de/online-kaufen/b12...

goldpharma.com

goldpharma.com/search/b%201...

This place is good to go for needles I have read

medisave.co.uk/consumables-...

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