Exhaustion prior to next B12 injection

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I've been on Cytamen (four weekly) B12 injections for 38 years due to PA following partial gastrectomy in 1959.

In the days running up to my next injection I sometimes feel quite exhausted and to combat this scheduled a few 3 week injections - perhaps twice/three times a year.

However my nurse is now refusing to allow me to do this. Am I the only person to experience this feeling of exhaustion prior to an injection?? sad

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  • Posted

    Hi,

    No you are not the only one...there are a lot more like you and some get by by getting methylcobalamin lozenges, others get to learn to self-inject and get their own supply etc. It is a sad situation that all that have been found to be b12 def are given the same standard treatment, no mater how old or big or small or active etc you are. There must be a difference to what we do with the injected B12 as some reach serum levels much higher than others although given the same amount etc. Some have no antibodies, others have classaical PA, some have no recycling of the B12 in the body as that function can also go wrong, if no monitoring of bloods and folate is for instance deficient in the body then the B12 will not be metabolised as it should, and visa versa, same counts if also iron def and or B6 def. B vitamins need each other and Calcium is needed etc, so get some investigation as to why you are not doing well on the standard treatment given. Also Thyroid could be tested etc.

    You will find a lot more like minded people on the PAS forum, see:

    Pernicious Anaemia Society

    The Old Fire Station

    Pandy Park

    Aberkenfig

    Bridgend

    CF32 9RE

    Tel: 01656 724163

    Web: www.pernicious-anaemia-society.org

    I hope this helps, do not give up, its so worth finding out what will give you a better quality of life! B12 is very cheap so its not as if you are asking a lot..

    Kind regards,

    M

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  • Posted

    After blood tests (which turned out \"normal\"wink but with great help and encouragement from the Pernicious Anaemia Society, I successfully argued my case with ny GP who has now agreed to allow me to have the occasional 3 weekly B12 injection :D

    Many thanks to PAsoc and to patient.info for guiding me in the right direction :arrow:

    Clive - still alive

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  • Posted

    Hi I suffer from this issue too, I've been having injections for 12 months now.

    I am aged 29 and started with injections every 3 months then moved to two. It took six years for my problem to be diagnosed in which time I suffered severe pain and exhaustion, minor vision problems and a couple of seizures.

    I still get tired in advance of injections and two months is not quite often enough. Could someone perhaps explain the basics to me please and give me some tips.

    - What determines how often injections are prescribed? I don't really understand what the considerations are.

    - Are active and younger people able/supposed to have injections more often or less often? What causes the B12 to be used up faster/slower?

    - What are the dangers and symptoms of having too much B12?

    - How long should it take for an injection to have an effect - I find it is usually 3 days, is this normal or just because I'm recovering from not having enough B12 from the time prior to the injection?

    - Is there anything else I should be doing dietary wise in order to maintain B12 levels?

    Sorry I can't post my blood test results for B12 levels, I don't have that info to hand and find some of the data they give me quite confusing.

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  • Posted

    Hi Jimmy 2,

    You will find all the answers to your questions on the PAS forum, see posts above,

    Kind regards,

    M

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  • Posted

    I am relatively new to pernicious anaemia, and have B12 injections every three months. In the week before my injection is due I feel totaly exhausted, and my muscles feel heavy and sore. Because I also live with lupus I was relating these symptoms to that, but your experience has made me realise the patter that is emerging. My practice nurse is very supportive, but has never really mentoned what can happen, (perhaps to stop me loking for problems). I have another injection booked for tomorrow, so I shall ask her opinion. All I can say is try to schedule important things away from the time your injection is due. Hope you feel better soon!
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  • Posted

    I have recently been diagnosed and have moved from daily to weekly injections two weeks ago. I too get very tired a few days before and my muscles feel heavy. I ma due to go on to monthly injections in two weeks and I am dreading it
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  • Posted

    Looking for help and advice really. I have been on B12 injections now for three years. I have these every eight weeks. My bloods say my levels are fine but by week five I am tired irritable and have palpitations and my peak flow drops. Quite frankly I just want to stay in bed. I also have a hypothyroid condition but again my levels are normal. I felt great in the beginning after I had been properly dosed. But I feel like I am getting less and less out of the injection now. Does anyone else feel as time goes on the symptoms get worse?

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  • Posted

    Hi,

    No you are not the only one...there are a lot more like you and some get by by getting methylcobalamin lozenges, others get to learn to self-inject and get their own supply etc. It is a sad situation that all that have been found to be b12 def are given the same standard treatment, no mater how old or big or small or active etc you are. There must be a difference to what we do with the injected B12 as some reach serum levels much higher than others although given the same amount etc. Some have no antibodies, others have classaical PA, some have no recycling of the B12 in the body as that function can also go wrong, if no monitoring of bloods and folate is for instance deficient in the body then the B12 will not be metabolised as it should, and visa versa, same counts if also iron def and or B6 def. B vitamins need each other and Calcium is needed etc, so get some investigation as to why you are not doing well on the standard treatment given. Also Thyroid could be tested etc.

    You will find a lot more like minded people on the PAS forum, see:

    Pernicious Anaemia Society

    Web: www.pernicious-anaemia-society.org

    It is worth getting copies of bloodtest to see what is meant by "normal" and also to see what has or not been tested, if there is slowly a dropping line in seum B12 etc. Same counts for thyroid function.

    I hope this helps, do not give up, its so worth finding out what will give you a better quality of life! B12 is very cheap so its not as if you are asking a lot..

    Kind regards,

    M

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  • Posted

    My mother has has the B12 injections for the last 40yrs,weekly to start with for 30 or more yrs then they were reduced to monthly then 3 months ago she was told it was to be 3 monthly. My mother is suffering as she really lost a lot of her energy,and had to ask to have it brought forward by 2 was as she was feeling very unwell,and not very steady on her feet. The reason she was given the B 12 was because she was diagnosed with pernious anaemia,and as she will be 90yrs old in July feels upset that they have reduced it as she really misses it ,can anyone give any suggestions that my help her.
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    • Posted

      Hi Skippy (and your Mum)

      I too have been having monthly (or 28 days) B12 "Cytamen" 1000 mcg injections for PA for 42 years and I guess you Mother was on them too until the "Neo Cytamen" injections given 3 monthly were introduced some years back.

      I found that I couldn't "last" that long between the jabs and asked my doctor to put me back onto the Cytamen which (reluntantly) he agreed and i'm still on them despite his trying to make me swap.

      As to your Mum's sypmtons of exhaustion and feeling unwell she is not alone in having these..  I know when I'[m approaching my fourth week feeling the same and so have reached an agreement with my doctor that I can occasionally "slip in" a 3 week injection as a "boost".

      His arguement against my extra injections was that the manufacturers (or he himself) said they were to be given "every four weeks" which doesn't take into consideration anything about the patient e.g, height, weight, age, occupation or general health.

      In my case I had a partial gastrectomy at the age of 17 back in 1959 and wasn't diagnosed with PA until 1972 when I was then put onto B12 monthly injections - and they must be working, but that doesn't mean that "one size fits all".  I'm a six feet four inches tall male weighing 13 stones having had two thirds of my stomach removed 55 years ago so my "needs" are likely to be quite different from those of your Mother but we do share the same debilitating symptons prior to the next injection.

      I am not a qualified medical person and can only speak from my own experience but I would suggest she reads some of the comments above and speaks with her doctor with a view to increasing the frequency of the injections she is on (if "Neo Cytamen") or being put back onto the original "Cytamen" Cyanocobalamin.

      I wish you both well for the future

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    • Posted

      Just a final thought - have you thought of joining the Pericious Anaemia Society? You'll find a lot of useful information and comment on their site.
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  • Posted

    I'm new to this. I was diagnosed on December 12th 2014. I'm vitamin b12 deficiency. I'm scared confused so many questions. I've had 4 injections I get them weekly. I have 1 more on Monday and then ever 3 months. My tongue is sore and the roof of my mouth. I'm on neo-cytamen 1000micrograms. I know it's stored in my liver. My blood result was 160 on the b12 deficiency is that bad or not to bad. After 5 injections what amount will be stored in the liver. How long will it last. Help me please..
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  • Posted

    Hi Martina43,

    You wrote - I'm new to this. I was diagnosed on December 12th 2014. I'm vitamin b12 deficiency. I'm scared confused so many questions. I've had 4 injections I get them weekly. I have 1 more on Monday and then ever 3 months. My tongue is sore and the roof of my mouth. I'm on neo-cytamen 1000micrograms. I know it's stored in my liver. My blood result was 160 on the b12 deficiency is that bad or not to bad. After 5 injections what amount will be stored in the liver. How long will it last. Help me please..

    I am not a medical expert, but as I understand it, we are born with 9 years worth of Vitamin B12 stored in our bodies and under normal circumstances, with an adequate diet we "top up" our reserves like a car battery is topped up as we drive along.

    Poor diet, old age (or in my case gastric surgery at the age of 17) etc can lead to an inability to absorb the necessary enzymes through the stomach in the normal way so it is necessary to have the B12 Cytamen injections you are having now.

    The reason you are having so many to start with is to boost the level of B12 in your system - like putting your car battery on "fast charge" when it's flat and the side effects you mention you are having are normal and should diminish over time, especially when you go on to the 3 monthly regime.

    I was diagnosed wit PA back in 1972 (I'm 73 now) and have been on injections of Cytamen (Cyanocobalamin 1000mcg) every four weeks for 42 years as that was what was prescribed then and apart from feeling slightly "exhausted" toward the end of the period now have no other "side effects".

    Neo-Cytamen given every three months is a slightly different formula and when several years ago I was put on it I found I couldn't cope with the long period of time between injections, so was put back onto the original.

    When first diagnosed my doctor told me (jokingly) "you can either go on a diet of raw liver three meals a day - or have these injections every four weeks". I chose to have the injections - and after 42 years I guess they're working....

    So Martina, please stop worrying - the injections do work and you'll feel a lot better for them when you are "fully charged".

    If you want to learn more, you might consider joining the the PA Society at http://www.pernicious-anaemia-society.org/ where you can read of others experiuences and useful artical relating to the subject.

    I wish you well - with best regards.

    Clive

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    • Posted

      Thank you so much Clive alive. If your 73 and been on injections then they really do work well.. so now in 5 weeks I've had 5 injections. The next one is 8th of April. . I have pins and needles in my finger tips on and of. The blood test said I also have early pre menopause.. im told this is most likely what the pins and needles and headaches are from.. If my reading is 160,,, 5 weeks ago What will it be after the 5 injections.. also Clive what good is 1000ml. . It's so little..
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    • Posted

      Hi Martina,

      As I said above, I'm not a medical person and can only tell you what I know from my own experience, but now you've had your initial "booster" course of B12 injections you should have enough in your system for it to "do its job" and hopefully the problems caused by the pernicious anaemia will be brought under control.

      Yes, one of the side effects of PA is the sensation of pins and needles because B12 deficiency can lead to nerve damage - so it's important to keep your 3 monthly injection appointments. Write them on your callendar in big letters.

      I also remember the sensation of lightheadedness and strange taste in my mouth after the injections from long ago and I have to say I don't experience them now.  Hopefully it will be the same for you over time.

      I hope this extract from my "memoirs" will help you:-

      "It was on the Wednesday afternoon of 10th May 1972 that I duly presented myself at the surgery and Dr Wool greeted me with the words “Do you want the good news – or the bad news?”

      I said that perhaps she ought to give me the “bad news” first. She replied “The bad news is, that you’re going to die – and you’re going to die within the next three years”

      .

      Naturally I was somewhat rather keen to know what the “good news” was. 

      So I asked Dr Wool what the “good news” was. 

      She said, with a mischievous twinkle in her eyes, “The good news is you’re not going to die within three years if you have regular injections (of vitamin B12) from now, for the rest of your life.

      To the relief of both of us (as I think Dr Wool was getting a bit frustrated with my long, ongoing “condition” too) the Schillings Test had showed that I was suffering from Pernicious Anaemia.

      This “disease”, if untreated (until only a few years before) usually led to an early death and the only known remedy then was a diet of raw liver three times a day. I’m not sure whether that was before, during, or after meals…"

      Well Martina, "the rest of my life" has lasted for 42 years so far, so the injections must be working biggrin and they will for you too.

      Take care of yourself 

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