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Exhaustion prior to next B12 injection

  1. 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

  2. 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: http://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

  3. After blood tests (which turned out \"normal\&quotwink 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 http://Patient.co.uk for guiding me in the right direction :arrow:

    Clive - still alive

  4. 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.

  5. Hi Jimmy 2,

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

    Kind regards,

    M

  6. 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!

  7. 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

  8. 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?

  9. 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: http://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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