Pernicious Anaemia/B12 Self Injecting.

Think there is often a positive antibody in Pernicious anaemia and it is classed as an auto immune condition. Just my understanding though as I am no expert.

Elaine1, thanks, I am going to ask. Can you explain the difference between PA and B12 deficiency (without PA)? Bobbysgirl19, don't think I have nerve damage, I'm sure I would know if I had. I have gastric atrophy which is a nuisance but apart from that, just the feeling I'm 'wading through treacle' for at least 8 weeks out of 12.

My GP will only authorise injections earlier than the standard 12 weeks where there is evidence of nerve damage. I have asked and that is the policy in my surgery.

Tiffaney would your GP take a blood test to see if you have an appointment just before your next jag? Our GPs will authorise giving at 10 weeks or 8 weeks if necessary. That might be an option for you? Worth asking x

I think if you have PA you are automatically B12 deficient because you are missing the Instrinsic Factor which absorbs B12 from your food, but you can also be B12 deficient without having Pernicious Anaemia. It's a bit confusing. I just want to feel less tired all the time. And if I get any extra illness to cope with it makes the tiredness so much worse. Teetime the standard treatment is still only every 12 weeks, I wouldn't be worried about the injecting, it's just being sure to get hold of the right drugs and not something dodgy. There's so much in the media about diabetic awareness, cholesterol levels, etc, but very little public awareness of PA/B12 def.

Tiffaney - GP said both PA and B12 deficient. Tbh, I assumed that was two ways of describing the same thing.

When I was a DN we only gave B12 at 12 weekly intervals but it was some years ago. My experience of self injecting is that people get used to it very quickly and prefer the convenience.

Thank you all for replying, especially Bobbysgirl19 who seems to be in a similar situation to me. I am torn between the comments on here and on the PA/B12 def group who make it sound so easy to self inject but I'm so uncertain about going ahead with it. Supernanauna1, do you have PA or are you B12 deficient? there is a difference. I will be seeing my GP in a couple of weeks just before my next due injection so will discuss it with her first.

After a routine blood test I was told I needed B12 injections. The doctor said 'your levels are so low, you must be constantly exhausted' which I found strange, because I felt absolutely fine! I had six injections over a two-week period and they seemed to think I should be feeling much better now. They couldn't seem to accept that I didn't feel any different!

I have to have another one in three months.

All very strange.....!

It's worth discussing your fatigue with your GP. I was convinced my B12 injections were not lasting out, especially after reading the PA website! I discussed it with my GP who tested my blood just before my injection was due. The surprising thing was B12 levels were fine but Folic acid levels very low. Seemingly B12 will not work without adequate folic acid levels, they go hand in hand. I have just finished a 4 month course of folic acid.

This is a 12 weekly injection and if given earlier should be based on blood test results taken prior to the 12 weekly jag. I have been a qualified nurse since 1974 and it has been given 12 weekly ever since I qualified and probably before.
How would you get the supplies as your GP would probably not provide more? Buying drugs online is a very dangerous thing as you have no idea what has been put in them.
I have known a few people who self inject it but it is not easy as it is intramuscular, 1ml of fluid and quite nippy to give as it is made up with sodium chloride and acetic acid.

Thanks Lucky Girl, that's an interesting article. There's obviously 2 sides to this argument. I have recently joined the PA and B12 deficiency support group and they are saying as B12 is water based it only stays in the system for up to 48 hours and it's not possible to overdose on it. In the 1960s it was given every month to PA sufferers, then in the 70's every 2 months and in the 80's it went down to every 3 months. I've been having these injections for 12 years but like many people, after about 4 weeks the effects wear off and I'm left with various symptoms until I get my next jab, the worst being overwhelming tiredness. Self injecting would be a last resort for me but I know more and more people are doing it just to get through.

www.livestrong.com/article/26012-side-effects-much-b12/

You can have too much B12 you know!!Maybe the every 12 weeks routine is what is correct medical practice and the best treatment for you.