How long is long enough

Hi all,

Sorry to have to rely on your expert knowledge AGAIN but I need to ask about my mums twice weekly B12 injection.

She has been having them for about 6 weeks now and her balance and tiredness are much improved so, after speaking to her doctor, I need to decide if she can come off of the twice weekly injections and have them every one or two months instead. I will be seeing her on Sunday, and speaking to my brothers who sees a lot more of her than I do, so between us we will have to make a decision. Apart from her balance and lack of energy is there anything else I should be asking her about, baring in mind my mum fought tooth and nail against the injections in the first place as, according to her, there was nothing wrong with her only old age. Is 6 weeks of injections long enough to allow her to drop back to one every one or two months (although personally I think she will need them monthly) or should I ask her doctor to carry on with the twice weekly prescription for a while longer.

Thanks

Moggie x

47 Replies

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  • I'm not an expert, although many others on here are who will advise you better, but I think the general advice is that if you have neurological symptoms then injections should last until symptoms stop improving and then every two months. Although even then many people need them more frequently. I inject weekly, and will for life probably! I hope your mum is acknowledging the benefits of it now! Good luck. :-)

  • After reading all these wonderful answers I think I may suggest to her GP that we cut down to one a week and see how she goes. Thanks for your reply.

    Moggie x

  • As LtAngua52 says the protocol in the UK is for loading shots to continue until there is no further improvement.

    Other things you could look at are anything to do with mood and improvements in mood - that's probably something you could assess without needing to refer to your mother.

    You could also try looking at a fuller list of B12 symptoms and see what on there you recognise as relating to your mother and whether she has noticed any improvement. Possible that carers might be able to share their observations if relevant.

    If your mother's stubbornness is something new then that could also be a symptom - though no guarantee of that ... my mother has become a lot more mellow and easier to deal with - probably because she doesn't have a lot of figut anymore ... but B12 it affects people in different ways

  • Unfortunately my mothers stubbornness is nothing new - but then she could have been suffering with B12 deficiency for years?????

    The amusing thing was that I quoted the NICE guidelines verse and chapter at her GP when he wanted to only do the loading dose for two weeks (injection should continue until neurological symptoms stop ect ect) and he had the check yesterday to quote them back at me. I think I may take the advice of people on here and suggest one a week for the foreseeable future and see how she goes as I only see her once or twice a month so I am not in a position to judge accurately on how she is doing, baring in mine she also has just been diagnosed with thyroid illness and severe vitd deficiency. She does not have carers as, although she is 84, she is a very independent lady. She only admitted last week that she is feeling better (not to me I might add) and that possibly she may have been ill and in need of the meds she is now taking!!!!!!!!

    Thanks you so much for your reply.

    Moggie x

  • That is only 12 injections. I am a grandmother and have been having injections 12 so far, unfortunately spaced out over more time than your mother's, and now I am having 1 a week which is not really enough but I do take supplements as well. I do not contemplate spacing them out yet. My balance had also gone and is now better but there is still room for improvement as with all the other symptoms. As Gambit 62 suggests check the symptom list.

  • Wish I could have this sort of conversation with my mum, she is still pretty much in denial that there is anything wrong with her and it has been a battle from the start. Trouble is she is totally deaf and having any sort of conversation with her is very frustrating, more for her than for her family. I tend to write everything down and just hope she takes it in.

    I did give my mum the symptom list but she just wasn't interested and hardly even glanced at it, as I said it has been an uphill struggle with her and I dont see her enough to be able to judge any improvements, which is why I came on here to ask the experts.lol.

    Thank you for your comment and I hope you continue to improve.

    Moggie x

  • Maybe her deafness is B12 related. Martyn Hooper did a survey with 1000 PA sufferers asking about their most troublesome symptom. Tinnitus was almost a 100% response :-)

    Hope all goes well for your Mum - and YOU !

  • Unfortunately not Marz as she has paget's disease of the head. Paget's disease is a disease where the body goes wrong and instead of new bone forming inside the old bone to fix it it forms outside the old bone so the bones get very thick which, in my mums case, has caused her skull to deform and this has crushed her eardrums. It is another form of an autoimmune illness but instead of the body taking something away with Paget's it adds something instead. Her nan, mum, sister and another three out of her seven sibling all have it (that's something for me to look forward to aint it Marz!!!!!).

    Thanks for your comment and I am managing to look after myself as well as my mum although it can be stressful at times.

    Hope all is well with you and your are still enjoying life to the full.

    Moggie x

  • Oh dear - that is so sad. Your Mum is obviously coping well in spite of her challenges. No wonder she is difficult at times - sounds as if she has a lot on her plate. Am sure she appreciates having you around for support - even if she doesn't always show it ....

    We are both fine and yes enjoying life ..... thanks. Tiz now the busy time of year with visitors coming and going. What a girl has to do to earn a crust :-)

    Take good care .... M :-) x

  • You too Marz.

    Moggie x

  • How about a compromise of one a week then one a fortnight just to see how she adjusts rather than stopping them for 2 months.

    It seems as though her gp is happy enough to treat frequently and many people complain of what seems to be a boom then bust scenario, where they have injections but have to wait much too long inbetween. Personally i think this is where the system fails, a gradual reduction would be seem a better method.

  • Hi Lisahelen,

    Great minds think alike, I think that is a good road to take. Cut the injections down very slowly if at all, at the moment

    Moggie worked hard to get them in the Ist place for her Mum, the GP may not be as quick to reinstate the script next time round.

    And Moggie, you will have all that bother with getting nurses onboard again.

    Sure they are only doing her the world of good. Lol

    J x

  • Have fully taken on board what both you and lisahelen have suggested and think that this, at the moment, is the way to proceed but will be making it very plain to her GP that both myself and my brother will be keeping a very close eye on her for any signs of deterioration and if this does happen I will fully expect for the twice weekly injections to be re-instated.

    Once again you and everyone on this site has provided me with valuable information which I intend to make full use of so thank you.

    Moggie x

  • I like your idea very much and think this is what I will suggest to her GP as he is now very open to what I suggest (well he would be seeing as he left her with untreated thyroid illness for god knows how long, due to her age!!!!!, I think he knows that I know I could have caused a lot of trouble for him and his surgery if I had a mind to but I just wanted him to do his job properly and do what's best for my mum). Thanks so much for suggesting it as I didn't know about the boom and bust thing so will be keeping as close an eye as I can on this.

    Your comment has been very helpful, thanks.

    Moggie x

  • Moggie,

    Good for you for standing up for your Mother with the physician. She's fortunate to have you and your brothers supporting her.

    Leilani

  • Thanks - we all have our different ways of supporting her, my bother (only have one left as one died a few years back with diagnosed and untreated high blood pressure - her was only 57 bless him) does all her odd jobs and gardening and I do all the medical stuff so I think out the two of us he came off with the better deal.lol.

    Moggie x

  • "having them for about 6 weeks now and her balance and tiredness are much improved .......I need to decide if she can come off of the twice weekly injections and have them every one or two months instead."

    If the NHS had offered me injections every 2 days until symptoms stopped improving I would have taken them. I had B12 deficiency confirmed a few years ago , I had multiple neuro symptoms but was only given one course of loading injections and was refused further B12. I think very wistfully about whether if given the correct treatment for B12 deficiency with neuro symptoms I would have recovered fully.

    Perhaps teh PAS can help?

    pernicious-anaemia-society.... 01656 769 717

  • Thanks for that, my mums GP wasn't open to this method at first but, after failing her on other treatments she needed, I have him on the back foot and he is now open to most things I suggest. I had a bit of a battle of wills with him yesterday over her thyroid meds as he said she was "in range now" so that was o.k. but being a thyroid sufferer myself I know that just because you are "in range" it doesn't mean you are fine - we came to a compromise and he has increased her thyroid meds enough for me to know it will make a difference to her.

    Thanks for the phone number I will certainly be using it and thanks for your helpful comment.

    Moggie x

  • This link (under 'Treatment') might help you decide Moggie but, personally, I would continue for longer:

    stichtingb12tekort.nl/surve...

    "The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately."

  • Hello Moggie. I agree with Polaris. For me, it would boil down to a question of 'where is most potential benefit'? Since the intensive B12 regime can do no harm and there may be the potential for further improvement, then my vote would be to continue for longer.

    As Jose651 says, once B12 doses are reduced, most people find it very difficult to get them reinstated.

    Hope all goes well.

  • And this is why I have made up my mind to ask the GP for one weekly injection and emphasise to him that I will be closely monitoring her for any down hill trend. I am not prepared to have the last 3 or 4 months hard work, which has seen me battling not just the GP but with my mum as well, end in her having to except the "standard" treatment as, like you and Jose651 have said, I know it would be harder to get frequent B12 injection re-instated if this happens.

    Just need to sell this to a very stubborn 84 year old - any suggestions.lol.

    Moggie x

  • Hi Moggie. Good for you. What grit and determination 😀. Sell it with love and laughter. Call it the elixir of youth! Call it anything that will get her to accept it!

    Sincerely hope that all goes well.

    Post and let us know how it goes x

  • If you dont see the funny side of things you would give up wouldn't you. Will definitely be posting again to let you know what the outcome is, it's just a shame I cannot rely on my mum to tell me the truth about how she is feeling. According to her she has balance issues because she has arthritis in her hip and spine, which I admit would make her walk funny, but would not make her so unsteady on her feet that she is having numerous falls.

    I forgot to say that I have also improved a great deal since taking advice from people on here regarding my mum as, although my B12 bloods were low (in the low 200's) they were not low enough to treat so I started taking 5,000iu supplements and low and behold I no longer have balance issues, my nails have stopped flaking and breaking and I am thinking more clearly - every cloud has a silver lining doesn't it????

    "The elixir of youth" LOL might just give that one a try!!!!!

    Moggie x

  • That's an awful figure - 4% - you have definitely helped me make up my mind to suggest an injection a week and not one every month or two as it has been suggested to decrease slowly so this is what I will do. Will be studying the link you sent me also as the more knowledge I have about this illness the better I am able to help my mum.

    Thanks for your helpful input.

    Moggie x

  • Polaris,

    Thank you for the link to the Dutch (?) Foundation for B12 Deficiency. I read the link you provided and will be looking at other links from the site. I may be missing this, but do you know what form of B12 is utilized by the Dutch...cyanocobalamin, hydroxocobalamin-, etc?

    Very interesting,

    Leilani

  • BTW, there is another report in English on this site:

    stichtingb12tekort.nl/repor...

  • Thank you for this Leila. I rather like the way the Dutch have so clearly put the information on B12 across,

    I'm sorry but I don't know what type of injections the Dutch use and can't seem to find anything on this....

    Another interesting link below that I wish I'd found when battling to convince my relative's psychiatrists that she is suffering from B12 def. :

    stichtingb12tekort.nl/weten...

    "Conclusion

    Apparently this knowledge (and all the aforementioned) was lost over the years, as these days many physicians are not aware of the fact that neurologic and neuropsychiatric symptoms of a B12 deficiency occur without anemia and/or macrocytosis, and that a deficiency can have serious consequences before anemia ever develops. Unfortunately it is not unusual, like Smith reported back then, to come across cases of this nature.

    A vitamin B12 deficiency can lead to serious neurological, cognitive and psychiatric symptoms. Delaying treatment can have devastating effects. Physicians should be aware that neurological damage can occur before anemia develops, and consider a vitamin B12 deficiency when neurological and/or neuropsychiatric symptoms are present, with or without the presence of anemia. The cost of testing for a possible B12 deficiency and treating the deficiency when present, are low. The benefits of an early diagnosis are potentially enormous, and not just financially."

  • Polaris,

    I also like the straightforward presentation on this Dutch site. I'm a retired RN in US and frequently choose good UK medical sites for my research because they, too, have similar no-nonsense approach.

  • Interesting that Dr Rietsema again stated that oral treatment with methylcobalamin sublinguals (with high doses of B12 relative to the RDA) was equally as effective as injections. However based on contribution from audience members there was reason to believe that several people were of the opinion that injections were more effective".

    Dr Rietsema wrote in Rapid Responses to the BMJ research document that she had good results for some patients with neurological symptoms when treated with methylcobalamin sublinguals.

  • Yes I saw that and it concerned me a bit, as I think most recent research debunks that view. But, I haven't yet followed through by looking into more of the related information.

    The other issue I would like to check out is the quoted 4% in relation to those who have improved after one year.

    Although we the patients are the ones with the personal experience, and I'm grateful that our experiences are being documented, we must remember that this method of data access is open to much speculation due to the subjective nature of people's descriptions.

  • Thank you all so very much for your informative and helpful replies. If I have missed replying to anyone personally I apologise and am blaming it on my "brain fog".

    It is not sitting well with me that I only come on here to ask for help and then disappear again once you have all so kindly provided it for me but, as this is not my illness and I have no knowledge of how it works I would not attempt to answer anyone's questions, although If you need anything thyroid answered then I am your girl.

    Apologies again if I have failed to thank anyone personally.

    Moggie x

  • All the very best to you and your mum, Moggie!

  • Thank you - I think I might need it!!!!!!!

    Moggie x

  • I think this actually might be your illness, Moggie, due to the fact that you have symptoms of deficiency and that B12 intake has improved them. Results of tests for B12 levels are often inaccurate, and the recommendations are to treat the patient and their symptoms, not the lab test numbers.

    Leilani

  • And dont I know that's true as I battle constantly with GP's regarding our NHS ranges. Just because you bloods are showing "in range" does not mean you are fine but I think our doctors use the ranges to save money by refuse treatment and to ask an NHS doctor to treat symptoms rather that blood results is like trying to find hens teeth - in other words you dont stand a hope in hell.

    Yes I know I have a B12 issue (along with my thyroid, vitd and iron issues - which all boils down to a very unhealthy gut which I have spent two years trying to correct through diet) but as the treatment, whether the range is under or just over the bottom figure as mine was, is the same I have chosen to self treat rather than going into battle with my GP AGAIN, although I will be telling her what I am doing and how much better I feel so that she knows I know I have a B12 issue.

    Very interesting conversation going on between you and Polaris and I will be looking at the links and educating myself so thank you both for that. It always amazes me how much these sites can educate and support the sufferer and many of use would stay extremely unwell where it not for them.

    Thanks again for your posts - very helpful and informative.

    Moggie x

  • You're very welcome, Moggie

  • I have just returned from GP appointment, have had 3 injections a week since diagnosis late March. I have been referred to a neurologist too. I have had much improvement especially mood and concentration: my pins and needles is no longer in my hands and arms or face, occasionally in my right leg and still in my left but mainly foot and ankle. This was a review of progress as neither of us is sure when we reach no further improvement. He felt it was subjective and was my decision whether to carry on with alternate days, I am going to try 8 weekly but go back if any deterioration occurs and reassess frequency. Also when I have response from neurologist will review again with GP. I am over 60 too so have put things down to old age like your Mum but am finding my GP supportive. Hope your mum achieves better quality of life too.

  • What an informative reply - thanks so much. So you too have decided on weekly injections, which is the way I think my mum needs to go, and I'm glad you have the support of your GP on this. It certainly seems like, with most things medical, one size certainly does not fit all. I will have to ask my mum if she sufferers from pins and needles and see what her reply is. Like you I can only guess at the "no further improvement" rule but unlike you there is a very stubborn third party involved (my mum) which is making it even more difficult to gauge.

    I hope you continue to improve and find the appt with the neurologist a benefit.

    Thanks again for the reply, I found it very helpful.

    Moggie x

  • "Just need to sell this to a very stubborn 84 year old"

    I have read that some scientists think there may be a link between B12 deficiency and dementia. As there is dementia in my family, I'm hoping that taking B12 may delay the onset. In the book "Could It be B12" Chapter 2, I think there are case studies where patients who were B12 deficient and showing signs of dementia recovered at least some of their cognitive function.

    ncbi.nlm.nih.gov/pubmed/156...

    nhs.uk/news/2010/09Septembe...

    I am not a medic just someone who has struggled to get a diagnosis.

  • Thanks for the links - why did you struggling with a diagnoses, is your doctor not supportive?? I think it is scandalous how some GP's view both PA and thyroid illness as I have trouble with both but I asked a question on here about treatments and diagnoses and found that treatment did not differ either way so I have not pushed my own doctor on this, even though my bloods where only slightly over the range, and am quite happy to buy my own supplements. I do insist that my GP tests my B12 once a year though.

    My mum is not bad for 84, she does repeat herself quite a bit - then don't we all.lol - but she isn't as bad as some you see (saying that she does go through a whole list of names - sister, other daughter, granddaughters ect until she finally hits on mine.lol.) and can be as sharp as a pin on some things like money.

    I can hear that dementia is a real worry for you and I hope the B12 will help keep it at bay - I didn't even know it ran in families.

    Moggie x

  • I had very difficult experiences including being shouted at, was written off as "just suffering depression" or told my symptoms were psychosomatic.

    Had b12 deficiency diagnosed a few years ago but only allowed one course of loading injections over 2 weeks although had multiple neuro symptoms.

    Strange how some of my neuro symptoms improved when I started to treat myself.

    Hope your mum continues to get the treatment she needs and great that she has you to support her.

  • So are you receiving the correct treatment now via your GP?? and who shouted at you, not a doctor surely?? I tried 4 different doctors in my surgery before I hit on the right one and even then she was always watching the pennies regarding blood tests ect, but after three years and a lot of battles with her we now have a good relationship because she knows I have done my research and know what I am talking about as far as my thyroid illness and connected vitamin deficiencies are concerned.

    I'm afraid I would not put up with someone shouting at me as I have quite a bad temper and would most likely shout back. How awful for you to have to put up with that treatment. I hope you are now in a much better place with your B12 treatment and continue to improve.

    My mum calls my support bullying but the good thing is that her doctor knows how stubborn she is and agrees that she needs a slight shove in the right direction as far as her ongoing treatment is concerned and between the both of us I am sure we will win.

    Wishing you well on your journey and thanks for supporting and helping me with my mums.

    Moggie x

  • Yes, it was a doctor and was also spoken to in an unpleasant manner by a neurologist. Was a bit traumatised..not so much by their behaviour but by the realisation no-one was going to help me at that point. Pressure was put on me to leave one GP surgery. I did however see one neuro who was kinder.

    When I came on this forum I realised that I was not alone in my experiences. I think people have to assertive and well-informed to get help with B12 issues.

    I had to resort to self treatment.

  • So sorry to hear that the NHS has let you down so badly, it really is hit and miss who gets treatment and who doesn't isn't it?, which is totally unacceptable in this day and age. It's the same with thyroid illness, one doctor will do their best to help when the next wont give you the time of day.

    Reading about you struggles makes me feel guilty that my mum has got all what I have asked for when people like you have been left to struggled and very annoyed with my mum for not appreciating how lucky she is. Maybe I will tell her this tomorrow when she is refusing to listen to reason.

    Wishing you all the very best.

    Moggie x

  • Hi All,

    Just a quick update as I have just spoken to my mums GP - he has agreed to 4 - 8 weeks of weekly injections and then 4 - 8 weeks of two weekly injection before reducing them to one a month but if myself or my brother notice a downward trend in her health then he will resume the two weekly injections again - so all in all a very good result, no I just have to sell it to my mum.

    Thanks again all for your help and guidance. I would never have know about the "boom and bust" scenario if not for people on here.

    Moggie x

  • So pleased to hear that the Gp is helpful and listening.

    Remember that the PAS can be helpful if there are problems in the future.

    pernicious-anaemia-society....

  • Thanks for that but it looks like I am going to need help with my mum rather than her GP as, according to my brother, she is adamant that she is only going to have one injection every two months, dealing with the GP is a piece of cake compared to dealing with her. So it's in to battle tomorrow when I give her the news that she will have to have one a week, the one every two and so on. Not looking forward to it I must admit as she seems to be under the impressions that I am doing it to annoy her and nothing else. Also found out today that a very helpful district nurse (NOT) has told her she can refuse them if she wants - I will be taking this up with the GP as, at best, it is irresponsible and at worse it is down right dangerous for the nurse to have told her this.

    Thanks for your support - you've been great.

    Moggie x

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