Pernicious Anaemia

Grandelly if you have Pernicious Anaemia your gastric parietal cells are compromised so you cannot absorb B12 through the stomach. B12 is water soluble so you cannot overdose on it, what you do not need (if any!) you pee out. I went for my B12 jab this morning and told the nurse how I feel and she has advised me to go back again to my gp, tell him exactly how I feel which is fine for a few weeks, tired for a few weeks, then knackered for the last 4 - 6 weeks before my next injection. Truly we should not have to live like this. I have tinnitus, no energy, shakiness and worst of all AMAG (Autoimmune Atrophic Gastritis). The actual phial of Cobalamin costs around 55 pence. Honestly if I could pay someone to inject me once a month I wouldn't hesitate. I am now seriously considering self injecting. Please join the group, you will be surprised how many of us are in the same boat and cannot get any joy from the NHS.

Grandelly if you have Pernicious Anaemia your gastric parietal cells are compromised so you cannot absorb B12 through the stomach. B12 is water soluble so you cannot overdose on it, what you do not need (if any!) you pee out. I went for my B12 jab this morning and told the nurse how I feel and she has advised me to go back again to my gp, tell him exactly how I feel which is fine for a few weeks, tired for a few weeks, then knackered for the last 4 - 6 weeks before my next injection. Truly we should not have to live like this. I have tinnitus, no energy, shakiness and worst of all AMAG (Autoimmune Atrophic Gastritis). The actual phial of Cobalamin costs around 55 pence. Honestly if I could pay someone to inject me once a month I wouldn't hesitate. I am now seriously considering self injecting. Please join the group, you will be surprised how many of us are in the same boat and cannot get any joy from the NHS.

Omg, l don't know why my post has come up so many times ?

I too, have had PA for over 30 years and have 12 weekly injections. However I also have fibromyalgia which adds to the feelings of tiredness, no energy etc.,etc.,
Like many of you I often feel exhausted with painful joints plus many other symptoms, but I do also think that your lifestyle has to be considered in conjunction with your symptoms.
My husband has vascular dementia, in it's early stages I admit, but when I consider that I do all of the shopping, cooking, cleaning, driving, gardening and get my husband to his Drs/Hospital appointments and try to keep him motivated/interested in life, together with having our grandchildren every week for meals, sleepovers, snacks at Nana's, I think , well O.K., I'm bloody knackered, but the positives outweigh the negatives! And really, I wouldn't have it any other way, at least I'm still here!!

I thought it fairly standard to have a 12 week gap between injections because red blood cells live for about that time. Obviously there are red blood cells of all ages circulating through ones bloodstream at any given time as the body doesn't make them en made. However I notice a family member is utterly exhausted for a week or more before his 12 weekly injection is due. Surely the frequency should based on clinical need not averages.

Just to keep everyone updated I went to see a different doctor yesterday, explained everything to him and he was most sympathetic, he said he did not have a problem with every 8 weeks. I said that I was knackered all the time and kept feeling nauseous, couldn't get out of bed even after a long sleep, got headaches etc. etc. I couldn't believe it, so I am happy about this outcome. However when I go for my B12 injection with the nurse, it is she who seemed to have the problem with me having the injection every 8 weeks, I will let you know next week how that goes. Thank you all for your replies, I know exactly how you feel. Join Pernicious Anaemia Society or go on the website. Martin Hooper! Great advice. Online petition, everything. Thanks again.

My hubby gets his jab every 4 weeks now. The 12 week thing is ridiculous, they should work on symptoms not the rule book. Try another gp or else buy B12 online and self inject, I know quite a few on PA groups who do that. I do hope you get this sorted out, it's miserable to feel so draggy xx.

I am a retired district nurse and we used to give b12 injections 4 weekly but for many years now the recommended regime is every 12 weeks. This as far as I was aware was the national standard practice once the initial course had been given.

hazeljoy, it doesn't suit some people and the NHS needs to be a wee bit more flexible, maybe some people are fast absorbers. My husband was a wreck until the gp shortened the interval between doses.

i had same problem i need mine every 10 weeks. snooty nurse used to wipe floor with me if i booked appointment for it spoke to my fav gp in practice told him how tired i got how i used to loose my food after eating after the 10 weeks , he got it put in writing on my records so now i get it every 10 weeks no hassel. so try speaking to a gp in your practice who has a bit of good bed side manner and understanding

Wish I had chosen a different username. I also have PA since a bowel resection in 1992. After a few years of getting B12 at the doctors, I mentioned to the nurse that I'd like to inject myself. She taught me how to fill the syringe and inject myself under her supervision. I get the B12 on prescription and the nurses supply me with needles and syringes. Thank goodness because there is no way I can go 12 weeks, 10 is the most I can cope with. Thanks everyone for the information of various web sites.

I know it's been a while but l'm just wondering how Grandelly54 is getting on with her Pernicious Anaemia? (I hope this doesn't post 10 times like before, so embarrassing ?)

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....havent got PA but got b12 deficiency.just diagnosed.because strict vegetarian diet...cross wasnt diagnosed/tested re b12 sooner..lost 4stone in under 5yrs.have been so tired.felt just yuk!! Anyway.on Thurs had b12 injection..first of 5 over ten days..but have had awful tummy ache.wind!!!! bit dizzy.dry eyes...ooh not sure now wether to have next one..SO just want to know if any of you experienced side effects..if so..what? and did you still carry on with the treatment..