Pernicious Anaemia

....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..

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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 ?)

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 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

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 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.

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.

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.

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.

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!!

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

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.

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.

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.

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.

I would say 'Change your doctor'! Ask for a second opinion. Maybe it is that in your area they are bound by what the CCG says they can do. If you are feeling that you cannot get out of bed then something is obviously wrong and you need it sorted out. Maybe it is not pernicious aneamia you have got but something else?

You could also enrich your diet by eating liver. That might help. Other food sources:

•Red meat, pork and poultry.
•Seafood.
•Beans.
•Dark green leafy vegetables, such as spinach.
•Dried fruit, such as raisins and apricots.
•Iron-fortified cereals, breads and pastas.
•Peas.

It all helps doesn't it.

I agree with what others have said - you need to see a consultant physician/haematologist to establish the correct treatment regime for yourself. Ask, no, demand a referral. You know how you feel and that's more important than your GP's pettifogging protocols.
I get quite exercised about this sort of thing - rule number one in medicine is that a patient should be listened to! Best of luck, and I hope you are feeling more lively very soon!

Grandelly54 - with Pernicious Anaemia you have to take control of your own health, because very few doctors understand how you feel

I think that Loobs had the best suggestion - try taking a daily soluble tablet of "sublingual methylcobalamin". Search for that on Amazon and see what you fancy

I take the B12-Methyl from Bio-Tech every and it works for me

This won't be helpful Grandelly54 but in my experience, most doctors hate the patient knowing anything or contributing any knowledge about their own condition. They seem to think they are the only ones who know how the body works. They can be quite touchy about it. My own GP was embarrassed when he tried to draw a diagram of the internal organs and I said, don't worry I'm a biology teacher. He screwed up the diagram and admitted I might well be able to do a better job of it!

if you look at these guidelines you will see there are two different outcomes for treatment:

www.buryccg.nhs.uk/Library/Your_local_nhs/CCGPlanspoliciesandreports/Treatment-vitB12-deficiency.pdf

Print this pdf off.

Outcome 1
Maintenance treatment for those
with neurological symptoms:
IM hydroxocobalamin 1000mcg every 2
months for life
Oral cobalamin is not recommended

OR

Outcome 2

Maintenance treatment for those
without neurological symptoms
where the underlying cause is not
dietary:
IM hydroxocobalamin 1000mcg every
3 months for life
Oral cobalamin is not recommended.

When the underlying cause is dietary,
please see overleaf for maintenance
treatment:

It seems that your original doctor was treating you as some one who had neurological symptoms
Treatment
For patients with neurological symptoms
Initial treatment:
Intramuscular (IM) injections of hydroxocobalamin 1000mcg every
second day until no further improvement
Maintenance:
IM injections of hydroxocobalamin 1000mcg every 2 months for life

The current doctor is treating you as if you had no neurological symptoms.

I think you need to establish what these neurological symptoms were etc. Did you see a consultant? I don't think yo have see a consultant recently as you have had this for such a long time. Whey not ask for a referral. Then check out on google the symsptoms so that any you have you remember to mention at the consultation. he will then write your new GP a letter.

These are some of your symptoms

Symptoms of pernicious anemia may include fatigue, shortness of breath, rapid heart rate, jaundice or pallor, tingling and numbness of hands and feet, loss of appetite, diarrhea, unsteadiness when walking, bleeding gums, impaired sense of smell, and confusion.

i assume some of these are neurological.

All the best.