Newly diagnosed

Hi

Iv just recently been diagnosed with pernicious anieama I also suffer from chronic back pain

Iv had my loading injections but a month on I still feel as bad pain numbness in foot and fatigue which is so debilitating.

I went back to my dr today and said iv done a lot of research and some people require monthly injections

Up shot is after breaking down she agreed to give me one more injection to see if it helps but if not I will only get them every 3 months any help info would be greatly appreciated

Ali

19 Replies

oldestnewest
  • I'm afraid the best you can hope for from a recalcitrant doctor is one every two months. Ask her to read the second paragraph in the British National Formulary. medicinescomplete.com/mc/bn...

    For people with neurological symptoms (your numbness in the foot is peripheral neuropathy) the recommendation is:

    Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

    For anything more you may have to do what many others do and self-inject.

  • Thank you that is very helpful 😃

  • Seems to be the standard, one more after loading, just to get you out of the door, happened to me. Now i self inject, after trying to get my gp onboard and failing.

  • oh sadly we have to say 'join the club' as you have one more gp who is not listening to you and considering your symptoms. I took a huge step to day and self-injected..... but I am concerned about what I shall say ((or not) when I next see a gp. Those of you reading these posts will know I have been shown the door by my gp when I told her I was driven to get a b12 injection privately. Too honest.

  • One tool I used, that worked both with a GP in the UK, and another GP after I moved to the USA, is a logbook of all your symptoms. Try to assess your own severity score. Measure the time of appearance from the day of the jab.

    Treat jab day as day zero. Some symptoms occur from food. But the ones from the deficiency typically occur the same time each cycle.

    Stress uses up B12 so sometimes symptoms start earlier. But they will progress more or less in the same order.

    The logbook also supports short term memory loss which is one of the neurological symptoms.

    Also record your food as a symptom can occur 3 to 48 hours after a particular food because the gut is involved.

    Some new symptoms are from the jab itself. These appear within 48 hours of the jab. They are very similar to the ones from the deficiency.

    Once you understand your pattern of symptoms, you gain some control back and when you know what to expect, you can relax and not worry or stress out.

    Provide a written list of your symptoms, especially all the neurological ones, to your GP and ask for it to be included in your file.

  • Hello pvanderaa. Excuse me for butting in...

    I'm fairly new here and am interested in your comment that 'some new symptoms are from the jab itself'.

    Wondering if this is due to potential nerve repair...or something else?

    Please could you explain further?

    Many thanks X

  • Some disagree with me but I think it is due to metabolism. When the cells of the body have been deprived of B12, toxins such as homocysteine build up.

    At the jab, they finally get B12 and metabolism kicks into high gear.

    For me a soft poo occurs about 6 hours later. I attributed this to the liver filtering out the metabolic byproducts, but the main byproducts from metabolism are Carbon dioxide and water.

    I also can get a symptom of aggression and sharp responses. Grumpiness lasts about 24 hours. I used to take my jab at night to try to sleep off most of this symptom, now I'm taking it in the morning and getting a lot of work done, but basically try to avoid people and arguments.

  • Thanks for replying pvanderaa. I'll keep an eye out for these symptoms 😖X

  • You may get different symptoms from mine. Do you keep a logbook of your symptoms?

  • Yes...started quite recently...interesting trying to spot a pattern...it's a very long log at the moment!

  • From what I have been able to read about B12 necessity under circumstances such as yours, you will need them monthly for the rest of your life.

    Next suggestion, either change doctors or at least get a second opinion

  • HI,

    I gave my GP a copy of the "BCSH Cobalamin and Folate guidelines" along with a copy of Martyn Hooper's book ....

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    UK b12 treatment

    BCSH Cobalamin and Folate guidelines page 8. I also found page 29 useful.

    patient.info/doctor/pernici...

    see Management section in above link for treatment info based on BNF.

    Uk b12 websites

    Are you a member of the PAS? Lifetime membership is currently £20 but prices are due to increase soon. The PAS can sometimes intervene on behalf of members. They are helpful and sympathetic.

    pernicious-anaemia-society....

    PAS tel no. 01656 769 717

    b12deficiency.info/

    b12d.org

    martynhooper.com/

    Link about writing letters to GP etc if unhappy with treatment.

    b12deficiency.info/b12-writ...

  • Symptoms of b12 deficiency

    UK b12 treatment for those with B12 deficiency and neuro symptoms is supposed to include extended loading doses and maintenance injections at shorter intervals.

    b12deficiency.info/signs-an...

    pernicious-anaemia-society....

    See Symptoms Checklist in above link. i tikced all my sympotms and gave a copy to GPs.

  • I so know how you feel.

    For more information on sourcing supplies and help you could look up my profile (double click on my name) and see my post "My Experiences".

    Good luck!

  • Hi Alimeth welcome to this community

    I'm not a medically qualified person and you have already been given lots of excellent advice from fellow sufferers.

    All i would say is that it is still very early days in your "potential" recovery and it is possible for things to seem to get worse before they get better as the healing process advances.

    Ideally you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-

    By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

    Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.

    That is the regime your doctor should be prescribing for you.

    I know it is difficult to do battle with your doctor when you are not feeling well in the first place but please do try to impress on him the importance of his reading the guidelines and (as others have said) present a list of your symptoms.

    Although it may not seem it at the moment, there is "life after P.A." as I've had it for 45 years and I'm still "clivealive" at 75.

    I wish you well for the future.

  • Hi clivealive

    Thank you so much for your reply I feel better within myself after hearing everyone's else's similar stories I now feel I'm not alone

    Thanks Ali .

  • I would keep pestering for Monthly injections or as a lot of people recommend self inject or find a nurse / friend willing to give u a monthly injection ..i find it to hard to relax myself enough to give myself an IM injection so luckily one of my friends (a nurse) gives me my injections...but keep trying to convert your dr ...

    The haematologist I went to (so I could gather evidence to give to my dr ) said that there is no evidence of harmful side effects if you have B12 injection every month

    It probably took about a year of monthly injections before my feet and hands felt normal again but if I leave it longer than 6 weeks I do get an an aching feeing in my hands and my ability to concentrate at work becomes increasingly short.

    Good luck with it all

  • You are very early in your treatment, and often the symptoms get worse to begin with as nerves are coming back to life. If your doctor is unwilling to do more, there are sublingual sprays and lozenges that can help. These can be bought over the Internet, or from some health food shops. I would estimate that it was nearly a year from the start of treatment until I began to really feel the benefit of the injections.

  • I would like to thank everyone for their kind messages the different info is very helpful.. 😃

You may also like...