Have I stopped alternate day jabs too soon ?

Hi all,

As previously posted, I was given a positive blood test for both IFA and PCA in October 2016, and have had usual ignorance from GP`s, so started self injecting every other day on Feb 6th, had massive improvement in neuro symptoms ( low mood/ irritable/ pins & needles etc) and more energy / less muscle ache, after approx. 2 weeks. Continued alternate day jabs until 28th Feb., then onto weekly jabs. ( total 12 jabs hydrox ).

Within 10 days low mood returning, tired and joint pain back, so obvious assumption is that I stopped alternate day jabs too soon ?

Have others had similar experiences, and how long should I carry on alternate day jabs when ( hopefully ) I feel better again ?

I am taking multi vitamin/ minerals to help b12 .

ATB

3 Replies

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  • Hi Barry1955 the B.N.F. guidelines say "until there is no further improvement" and as you cannot overdose on B12 and you notice the difference "within 10 days" perhaps that's your answer.

    I'm not a medically trained person but there are others on here who will be able to better advise you, so all i will say is make sure your Folate level is "healthy" as this works with B12 and iron to produce red blood cells.

    I wish you well

  • Hi Barry1955. In short, yes...sounds like you still need every other day injections.

    Recovery and repair can take some time, especially if you've been deficiency for some time...perhaps many months.

    Suggest you go back to every other day for a while, then try reducing the frequency slowly...going back to more often if symptoms return.

    Make sure you eat a potassium rich diet as potassium often gets low when on frequent B12 jabs (you can get information form the Internet about what foods are a good source...bananas and low salt being two). Don't be tempted to take potassium supplements...this can be dangerous and cause heart problems, so should only be done under direct medical supervision).

    Just wondering if your GP is providing any B12 injections? If not, good idea to try and get them (even if not as often as you need) since this will keep you 'in the system'. Also means that you can ask for blood tests to check folate, ferritin, vitamin D etc (often low in people with PA, who tend to have associated absorption problems). GP could also check your potassium levels.

    Good luck and post again if you need any further help 👍

  • Thanks Foggyme,

    Not getting any treatment from GP`S, 1 does not understand you don't have to be anaemic to have PA, 2nd GP frightened of overdoing by following guidelines for alternate day jabs until symptoms stop improving. Both want to see if my colonoscopy confirms my positive IFA in October 2016 so passing buck to Gastroenterologist. ( told my photos of stomach all good, so waiting for results of the biopsis taken )

    No one seems to understand a positive IFA test is 95% accurate in diagnosing PA - hence my reason to self inject ( 5 months after what should have been a cast iron diagnosis to start treatment )

    I try to eat 1/2 bananas a day and take a multi vit/mineral tab that contains 40ug ( 200% nrv ) Folic Acid ( is this same as Folate ? ) My serum folate was 5.5 ug/L on last bloods back in October, GP said was fine ?

    Seems we have to try and become our own experts on this disease, as GP`s have obviously learnt a little about a lot. Sad situation isn`t it.

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