Pernicious aneamia

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Hi. My partner (male) has PA. He had his loading doses and is now on 12 week injections. We are in thr uk. He is very symptomatic but his gp refuses go test anymore and states that his symptoms are not related. General fatigue, headaches, stomach issues. Tired all the time. Terrible memory. Irritable. I have suggested he take folic acid which we have purchased. I have am also trying to be a bit more knowledgeable about his condition. If we purchase methyl cobalamin and he let's it melt under his tongue will this help at all. Becausr he is PA we are unsure I'd his body will absorb it. People have suggested self injecting. But he won't do that. Any help would be greatly appreciated. We have seen another gp but they all say they will not re test nd 12 weeks is fine. We are in the uk. Thank you

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  • Posted

    If your partner has P.A. he should be being treated in accordance with the B.N.F guifdelines as follows:

    Treatment of cobalamin deficiency

    "Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

    Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks, then every three months. 

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment".

    Particular note should be made of the highlighted paragraph which referes to treatment of P.A. patients with neurological symptoms "until no further improvement" and also that the frequency of injections thereafter should be "every 2 months" not 12 weeks.

    It is good that he is taking folic acid as this is essentail to process the B12 and he probably should have been taking it from day 1.

    I think he should list his symptoms and go back to his doctor with the information I've quoted.  If possible go with him to validate his suffering as the docyor is less likely to "pooh pooh" them in front of a witness.

    Sublingual tablets or methylcobamalin spray may help a little but the amount absorbed by the salivary glands is reckoned by some to be as little as 2%

    I am not a medivcally qualified person but one who has had P.A. for 45 years and I'm still "clivealive" at 75 

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    • Posted

      Hi Clive,

      Thank you for the information.  It is much appreciated.  I certainly will print all this off and show my partner and hopefully get another GP appointment.  Thanks again.  Sharon x

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  • Posted

    Sorry to hear about the strange treatment all of you receive in the UK. I get the loading doses but not testing is really weird. I am in US. Drs will test when ever there seems to be continuing symptoms. I'm not sure what yr partners reason is for not self injections ? I have been giving my self shots for 20 yrs. I now give once a week as I am now 68. As you age PA has a history to get worse(absorption ). I wish you good luck and better health  Suzanne

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    • Posted

      It is generally considered that re-testing serum b12 after the injections have started is pretty meaningless unless the result comes out very low.

      Were you referring to the MMA test Suzanne?

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    • Posted

      Thank you Clive for your informing me of the testing, I was referring to reg. testing to watching all the levels B12, folic, vit. D , calcium . Etc. I am tested every 6 mon. If more symptoms were happening, that  would need more tests.  What ranges do your Drs. consider normal for B12 ? Here in US I am lucky enough to have very good coverage for my health so that gives my Drs. The ability to preform what tests they feel necessary. 
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    • Posted

      My last tests taken last year were:

      Serum Folate   18.2    ng/ml        3.10 – 20.50ng/ml

      VITAMIN B12    469    pg/ml        187.00 – 883.00pg/ml

      My B12 is "high" because I have cyanocobamalin B12 1mg injections every three weeks because I'[ve had P.A. for 45 years and I'm now aged 75. 

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  • Posted

    Hi, my partner, also male has PA (diagnosed 4years ago) he's also displaying all the symptoms same as your guy also with jelly legs and tinnitus. Again he's on standard treatment injection every 12 weeks but he never lasts that long. We've started returning to docs every 10 weeks last couple of cycles and fortunately he's been given the injections early. It seems to take a good four or five days though after injection before symptoms start to recede a little. Does anyone else feel it takes a while before they start to feel improved? He also takes methyl cobalamin but he takes the high dose 5000mcg and he takes two dissolving under tongue, he thinks it does make an improvement. Our doc also thinks that all his symptoms "must be something else, not just lack of b12" though he's also diagnosed with fybromyalgia. Which surprise, surprise has an awful lot of similar symptoms as PA/b12 deficiency. I'm also going to take printout of clivealives post next time we visit doc, try to get injections when he needs them. Angela

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    • Posted

      Is your partner supplementing with folic acid?  Folate is essential to process the B12 he is having injected and gets used up doing it.

      Also I repeat the fact that P.A. patients should be on (at least) an 8 weeks frequency of injections - not 12 - as so many doctors insist despite what the BNF guidelines say.

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  • Posted

    Hello Sharon

    I have been diagnosed for 7 years with pernicious anemia and also from the UK. I receive 4 weekly injections otherwise I'm hospitalised due to dehydration caused by non stop vomiting. Your partner has a right to demand what is necessary from his G.P in regards to his condition, it can be maintained he just has to find what is best for him as every individual has different experiences.

    Best of luck.

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    • Posted

      That's a new one on me Sharon.  Are you saying that without the 4 weekly B12 injections you get dehydrated? Wow!

      My heart goes out to you

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