Newly Diagnosed

Hello there. I was diagnosed last week with pernicious anaemia and the dr started my b12 jabs there and then. He said I was to have 5 over a two week period followed by 1 every 3 months. He also put me on folic acid 5mg per day for 3 months as this too showed low on my blood tests.

I'm due to have my third jab today and, as yet, I still feel pretty awful. The tiredness and 'not being with it' are my main problems. I'm finding it very difficult to concentrate on daily jobs and the other day my son found a carrot I had put in a kitchen drawer instead of the fridge. Silly yes, he found it funny too, but it worries me that I'm never going to get back to my normal self.

I'd like to know when I should begin to feel better and stronger. Its really hard trying to carry on, I'm a single mum with two sons and a job, I had to leave early from work yesterday as I was so exhausted.

I have read about nasal sprays and lozenges for extra b12 - is that something anyone who has PA would recommend alongside the jabs, or do I wait until I've had all 5? Sorry lots of questions, but feel in the dark about these issues. Many thanks.

10 Replies

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  • Hi hjcohen,

    I have just finished my loading doses for PA and now on 2 monthly injections, as have neuro symptoms as well,

    I have a B12 Mouth Spray which I bought from Holland and Barrett, which you spray under your tongue, as I can't absorb vitamin pills. I find it doe's give a little boost when I am flagging but like you I still feel pretty rubbish I guess it just needs time.

    I don't know what your levels are but you could try and push for 2 monthly injections, I had too and thankfully had a GP that listens to his patients on an individual basis.

    But don't use spray before you have a follow up blood test and before you have your next scheduled injection.

    myrab

  • Thanks for your reply myrab. I will bear in mind the spray you use should I need at a future date. I can't actually remember what the dr said my levels were, except that he said very low b12 and folic acid. He did say he would do another blood test after 3 months.

    I think I'm just impatient and was probably unrealistic in thinking I would start to feel immediately better.

  • Hi hjcohen,

    Welcome here, sorry you have been diagnosed!

    But well treated PA is OK eventually. It can take time to feel better, it can be days/weeks/ or months. People are very different ,different reasons for PA, different serum levels etc, but most eventually do feel a lot better in time!

    There is little point in adding more B12 to loading doses of B12 as your body will just be flooded now and anything you add will just be wasted. Eventually when you are on maintenance you may feel you run out of B12 to quickly and then you could start investigating why and what you can do etc. But its early days for you now, consider yourself ill, give your body time and rest, tell your family you need time to get well. You will get well again, but it can take time. Its taken years to get B12 depleted, that does harm, it will take some time to get everything back right in your body. It takes 3-4 months to replace all faulty blood cells formed without enough B12/ folate.

    Have a look at this post, its got some answers for you, same question, see:

    healthunlocked.com/pasoc/po...

    I hope you will feel a lot better soon though, have faith,

    Kind regards,

    Marre.

  • Hi Marre, thank you for your reply, it's good to hear from people who understand how I actually feel. I read your reply to somebody else about jelly legs and that's exactly the feeling, totally weird. I will bear in mind your advise about how long it takes to rebuild red blood cells as I was obviously being totally unrealistic in thinking I would feel better immediately.

    Thanks again.

    Hayley

  • Oh so many weird things like jelly legs; feeling as if the car is moving when you are standing still at a junction and the unfortunate clumsy getting out of a car and people asking how much you have had to drink..far to many odd things, but it will get better, with the right treatment, Marre.

  • If you have neuro symptoms - and tiredness and fuzzy thoughts ... as well as jelly legs would put you in that category ... then the correct treatment per NICE guidelines is to start with is loading shots every two days until the symptoms stop improving and then maintenance shots every 2 weeks.

    Not sure that a blood test at 3 months is necessarily going to provide any useful results as your system may still be flooded with the B12 from the loading shots without necessarily having metabolised it so you can use it at the cellular level.

    Whether or not I feel any effect from shots is a bit hit and miss - didn't remember anything from loading shots (but then everyone was focused on recovering from a broken ankle and nobody was giving me any info on B12D - just told me I needed shots but not what the symptoms were - was a period late last year when I did notice something but I think using a nasal spray at high doses seems to work better for me. For me the injections only seemed to last for about 4 weeks at max anyway.

    Not sure if my problem is PA or just another absorption problem and everyone tends to be different in the way they respond.

    Really hope that you do feel better soon.

  • Hi I can empathise. I thought I was losing my mind at first. I had no memory, couldn't think straight, losing things. This started to improve a bit after a couple of weeks alternate day injections. It will get better but if you are both B12 and folate deficient it my take you a bit longer. Good luck.

  • When I was first didnosed I was given 8 jabs in 2 weeks, a blood transfusion and spent a week in hospital. I was told that it can take upto a year to feel completely normal again. You just have to give things some time.

  • Thank you all for your replies, it is so nice to know there are other people out there who understand what it feels like.

    On a positive note, I have started to see some improvements, my brain function and memory are much improved and feel like the 'on switch' has been activated, more energy etc. I have one more injection left out of loading doses to be had on Tuesday. Best wishes.

    Hayley

  • Great! Good news. I cannot believe the difference B12 made to me. If I hadn't had it myself, I would find it hard to believe.

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