Pernicious Anaemia Society

Is this normal if my treatment is working?

Is this normal if my treatment is working?

I just looked at a previous post and replied it has got me thinking.

Anyone and everyone comment please. I have had a firm diagnosis of PA. IFAB pos, AMAG, and UC. For very many years . On the 3 monthly 1000 mcg I’m jabs. I’m struggling as are many with PA, with the low frequency of this treatment.

?? Could the lack of half moons indicate that I’m poorly treated?? In other words could it be , as a symptom of B12D , evidence that a reversal of “deficiency “ has not occurred?

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Hi,

When I finally got b12 after years of being symptomatic, my nails improved and I could see halfmoons ( also known as lunulae) on most fingernails. I can see what appear to be lunulae on two of your nails and possibly on a third.

I'm not sure if lunulae show up on little fingers, my little fingers do not have any visible lunulae.

"On the 3 monthly 1000 mcg I’m jabs. I’m struggling"

Do you have neurological symptoms eg tingling, tinnitus, pins and needles, migraine, balance issues, memory problems plus other possible neuro symptoms ?

B12 Deficiency Symptoms lists

pernicious-anaemia-society.... See Checklist PDF on right of page

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In UK, people with B12 deficiency with neuro symptoms are supposed to receive following treatment regime

A loading jab every other day for as long as symptoms continue to get better then an injection every 2 months

UK B12 treatment info , including those with neuro symptoms, can be found in

1) BNF British National Formulary Chapter 9 Section 1.2

UK GPs are likely to have a copy of BNF on their desk/bookshelf

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

2) BSH Cobalamin and Folate Guidelines, about a quarter through guidelines

b-s-h.org.uk/guidelines/gui...

Unhappy with treatment (UK info)?

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about undertreatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.

CAB NHS Complaints

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

UK charity that offers free second opinions on medical diagnoses and medical treatment.

PAS can sometimes intervene on behalf of PAS members, think it's easier for them to help people with a confirmed diagnosis of PA. PAS can probably tell you more about UK B12 treatment.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

I am not medically trained.

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Thank you I have recently joined the PAS, I’ll ask them and thanks so much for your help here.

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Has your iron/ferritin been tested since starting b12 injections?

Once b12 injections begin, folate and iron/ferritin stores get "used up".

I dont know how long you have been getting b12 injections but i had 18 over 5 months with no return of moons until after i started taking iron 3X daily. 5 days into taking it and i feel way better AND have a half moon on my left index finger!!!!

I know everyone warns against taking iron but if you cant get a blood test done then taking it for 5-10 days to see if it helps, couldnt hurt.

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It’s been a long time from starting on b12 3 monthly injections , approximately about 8 years, They were started when I was under the gastro clinic at the hospital after the abnormal repetitive megablastic blood tests and subsequent B12 serum and IF antibodies to prove I had AMAG/PA. I don’t remember having tests but I may have had for foliage/Ferritin. Nothing recent. I know for a fact I did not have the loading dose. I think I just had 1 a week for 2 weeks then on to the normal 3 monthly.

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tests from 8 years ago won't mean anything in relation to current iron levels.

If you have AMAG then it is quite possible that it will affect your ability to absorb other vitamins and minerals - which would include iron so regular testing of iron levels wouldn't go amiss.

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