Hello,

I just wondered if anyone else has been tested for pernicious anaemia - I understand it's a vitamin B12 deficiency - is that caused by my meds? I'm on MTX, Sulfasalazine and Hydroxychloroqine.

Thanks xx

Hi

You are right - pernicious anaemia is a B12 deficiency. I have it, and originally it took a long time to diagnose. My consultant used to say to me your haemaglobin is low do you feel like you are firing on 3 cylinders. Well, at the time I just felt like I normally did and it was only when it was diagnosed when I happened to be in hospital having tests and bed rest (which is what they did in the '80's) that they discovered it. I then had B12 injections monthly for a long time and now have them every 3 months. This is the standard treatment and you have to have them for life. It runs in my family, my mum had it.
Hope this is helpful

Ailsa (NRAS CEO)

Hi all!

Some info from one of the medical websites i can access -I've added a few notes underneath in case required

'Pernicious anaemia is a disease of the stomach that is characterised by megaloblastic anaemia due to vitamin B12 deficiency, itself, secondary to intrinsic factor deficiency and gastric atrophy. It usually has an autoimmune basis. In adults, pernicious anaemia is an auto-immune disorder. (In children pernicious anaemia may occur very rarely due to congenitally absent or abnormal intrinsic factor.)

PA primarily affects the elderly - most patients are over 60 years of age; less than 10% of cases are under 40 years of age; it is rare in children. Women are affected more often than men, in a ratio of 3:2.

Treatment is aimed at correcting the vitamin B12 deficiency.'

megaloblastic anaemia - nothing like as evil as it sounds - it just means that there is anaemia (not enough red blood cells which we need to carry oxygen which is why being anaemic can make you tired, fuzzy & breathless) & the red blood cells themselves are unusually large - because we need Vit B12 to make them properly
Intrinsic factor is a substance produced by the body which we need to absorb vit B12 - you can have autoantibodies to this but it is rare - most of those with auto-immune pernicious anaemia have autoantibodies which attack the cells of the stomach lining (gastric parietal cells)

Treatment is by Vit B12 supplement - usually by injection because the problem isn't usually lack of Vit b12 in the diet but the fact that the stomach can't absorb it properly. Sometimes however highish oral doses are enough. You usually feel much better fairly quickly as it only takes a few days to kickstart red blood cell production off again.

Hope that helps a few of you! (and that I'm not teaching too many of you to suck eggs)
Luv to you all

Love to you all

I've been having three monthly B12 injections about 7 years and I've had RA for over 10 years. It was picked up because my red blood cells were the wrong shape and too big I think, I was tested ad then had a course of 3 injections each week for 2 weeks then monthly and then 3 monthly. It isn't any bother, I just have it at the same time as my blood tests. Glenys.

Hi everyone,

thankyou for the refresher on pernicious aneamia - really helpful! It was discovered I have positive parietal cell and instrinsic factor antibodies years and years ago when they diagnosed Graves disease ( autoimmune over active thyroid). So far I have not got pernicious anaemia (got RA instead!!!) but it is like being on a time bomb. Good to hear it is easily dealt with and relatively common.

Just another in the autoimmune lucky dip!
love from Alison
xx

hello, i'm waiting my results from test taken 2 weeks ago. I'm assumign from deafening silence that the first borderline lot have settled down now into nothing!
hope yours is ok! xfx

Hi all i have b12 jabs every month, have needed them for a while now. GP doesnt think its pernicious anemia but is probably due to the RA meds. I m on methetrexate and sulphalasine. I think the treatment is the same in any case. Loading doses of b12 injections then a jab every three month as standard. I need one every month but it s not so bad as it only takes a minuite. Some people can learn to do it themselves although i cant manage it. You can get your level tested by just ticking the b12 box when you have your usual bloods done. Hope this info is of some use.