New to the group

[Summerrain14]

Morning, I’m just popping by to say hi. I’m new to the group. I’ve had my diagnosis of pernicious anaemia from around 9 years now. On my B12 injection since my diagnosis, thank goodness for them. I had my injection last night and I’m feeling like a new person this morning. The last two weeks running up to having my injection I was pretty unwell with all my neurological symptoms back and bed ridden. Who would think this condition can make us feel so unwell. I’ve been advised to see my GP

If I become that unwell again so they can review the frequency of them. I have numerous health conditions so it is always difficult to know what makes me feel so unwell sometimes. I have an auto immune condition called Lupus (SLE), I also have GERD and am now registered Deaf/Blind. I was registered Blind at four years old. I developed a severe hearing loss in both ears around 18 months ago. Makes the days interesting at times. Hehe. I feel so fortunate to have had my diagnosis so quickly. Think it took only two days and then was on treatment by the third day and have remained on them since and will do for life. Thanks for having me in the group.

[Nackapan]

Morning

I'm new to this too.

You have so much to deal with.

Hope you find this useful. Sounds like you do need them more often if you had such a good result.

My first post explains where I'm at.

Hope you can at least get that part of your health sorted soon.

[Summerrain14 in reply to Nackapan]

Thanks so much for the welcome. I shall go in search of your first post.

[wedgewood]

Welcome Summerrain14. Yes it sounds as though you need injections more often, at least at the moment . If you’ve been reading posts on here , you will have realised that most of us need to get injections more often than the NHS will allow . If you feel the need to go down that route , you will get advice on here as to how to go about it .It is not expensive . Also rember that you need folic acid/ folate to act with B12 . You can get plenty of folate from green leaved vegs , peas etc . But if you are concerned about not eating enough veg , just supplement with folic acid , say a 400 mg tablet daily . Best wishes .

[Summerrain14 in reply to wedgewood]

Thanks for the welcome and useful advice. When I was first diagnosed nine years ago I was taking folic acid alongside the B12 injections but thought I only needed to take folic acid for around four months. I’ll have a chat with my GP and see what they say. I may be picking everyone’s brains after my chat with my GP.

[clivealive Forum Support]

When you see your GP Summerrain14 ask him to check the N.I.C.E guidelines on the Treatment of Vitamin B12 Deficiency where it states (among other things) :-

For people with neurological involvement

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

You don't say how often you have your B12 injections but perhaps your doctor will increase their frequency because of the return of neurological symptoms in the run up to your next scheduled one.

I am not a medically trained person.

I wish you well

[Summerrain14 in reply to clivealive]

Thanks for the advice Clive, this is really useful. I had the initially loading doses when I started the injections nine years ago. I then went to three monthly injections and have been ok until recently.

[clivealive Forum Support in reply to Summerrain14]

I had the same problem some 8 years ago having had P.A. since 1972 and my then "one size fits all" doctor refused to increase the frequency of my four weekly cyanocobamalin injections so I joined the P.A. Society and asked the question "Am I the only person in the world..... etc" and was amazed at the response - No I was not alone.

I now have my injections every three weeks. (I'm still on cyano because of an allergic reaction to hydroxo when it was introduced in the mid 1980s)