Pernicious aneamia

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 

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

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

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.