Now, as I’ve said, this isn’t unexpected. I know that one of the results of our online petition at the Welsh Government was that the Chief Medical Officer advised that if patients needed more frequent injections then they should supplement with oral tablets.
It’s a long and convoluted story that involves several agencies and I will do my best to explain the process although I will have to confine my report to the situation in the UK.
These are the people who will approve or reject the newly developed medicine; and they will take some convincing. Only after the new drug has been subject to many years of testing on volunteer patients, and a comprehensive investigation into any side-effects and any other possible complications has taken place will the evidence be placed before the MHRA. The MHRA is composed of various departments made up of highly skilled and knowledgeable doctors, pharmacists and other scientists. Visit their website and you will begin to understand the scale of the work that the agency is involved in. It’s they who are currently involved in the evaluation of e-cigarettes whilst at the same time producing new standards for blood transfusions. And it is the MHRA who will eventually be responsible for deciding whether any pharmaceutical company’s new 1mg or 2mg oral tablet will be safe to treat Pernicious Anaemia. The decision shouldn’t be too difficult as we know that 1 or 2mg tablets are used to treat the disease in other parts of the world.
The precedent has been set.
In a word it’s money.
Now we know that the British National Formulary (BNF), that little booklet that is produced twice a year by the Royal Pharmaceutical Society and the Royal Society of Medicine which acts as a reference for doctors to consult in order to treat patients correctly, used to recommend a 1mg injection of Hydroxocobalamin every month when the injection was introduced at the start of the 1960’s. For some reason, and I can find no scientific basis for this, that recommendation was changed in 1974 to an injection every two months and then in 1984 to every three months. When I met with the editor of the BNF a year or two again she told me that any change in the treatment would have been based on ‘evidence based research’. Yet I can find no evidence of this. I’m not calling anyone a liar – I just haven’t been able to find any papers that the decisions to change the treatment was based on. Some people say that because Hydroxocobalamin replaced Cyanocobalamin the treatment was changed because Hydroxocobalamin is retained longer by the body which is a highly suspect argument that I go into in my last book and so I won’t repeat it here.
And three of those ‘know when it’s due’ indicating that they are right at the edge of their treatment envelope.
Secondly, what about ‘wellness’? The patients’ blood may have returned to normal but that might not mean that they would do as well on tablets as they did on injections.
Thirdly, the recommended amount of B12 replacement therapy is based on a study that began in 1947 on just seven individual patients – 7!
There are other arguments I can make.
Then there’s other evidence such as where tablets have been introduced to treat patients with Pernicious Anaemia doctors still keep on prescribing the injections and anyway, patients are easily able to purchase injectable B12 from other sources and treat themselves. The British Medicine’s Act that stated that medicines that are injected are available only on prescription was passed in a world that was very different from today; a world without easy access to injections in pharmacies across the world or from internet sources. If my doctor stopped my injections and told me to take oral tablets I would simply carry on self-injecting and I suspect a great many other patients would do so too. And there’s one final piece of information in my arsenal – the recent Guidelines on treating Cobalamin states that injections remain the most reliable method of treatment and that patients would prefer them as they are tried and tested.
As someone who has had PA for over 35 years, I have tried all the methods. And really wanted patches etc to work.
I am one of the few who cannot take hydroxocobalamin.
When I was unable to get cyano cobalamin injections in Australia, five years ago, I relied heavily on tablets, patches, sublinguals,
Sprays etc. In eight months, still trying to get the elusive cyano
Injections, I ended up in hospital with severe peripheral neuropathy.
By then it was irreversible.
Daily injections have given me some feeling back in my limbs over
Three years, but I am still severely disabled, need a walker and help around the home.
These researches have a pool of 7000 members to listen to,,
surely our experiences are the best research.
I was severely B12 anemic 4 years ago when I was 67, but over a period of 2 years, monthly injections restored my levels to around 500…BUT not my mood swings or neuro problems, which reappeared every month about 2 weeks after injection. A doctor friend told me that very few people needed injections any more and that I should try 1000 mcg tablet daily instead and see how it goes. The results were and are spectacular! My mood is stable, most of the neurological issues are greatly improved and I feel like I finally got my life back. We can get 1000 mcg over the counter here in Canada. My levels are now up in the 1200 mark, which is what doctors in Japan aim for for optimum health effects. I can’t believe doctors in UK are still stuck on B12 injections every 3 months. It isn’t nearly enough.
What form of B12 do you take?
Hi Martyn, I read your book ‘What you need to know about Pernicious Anaemia and B12 deficiency’ last night. Very interesting, thanks. However, I don’t understand why the emphasis is on getting B12 injections when other methods of B12 delivery (for example methylcobalamin patches or sub-lingual) seem to be effective and more easily obtainable.
Regards,
Simon Buxton.
I take oral B12. Never have considered injections. I take up to 2000mg a day always sublingual. No problem, just carry them in my pocket
I was diagnosed with pernicious anemia last year just after my 40th birthday though I feel certain it has been a detrimental factor to my life since a child. The injection barely lasts weeks before I start feeling the symptoms develop which I have had the displeasure of experiencing all of them. I have tried to arrange more frequent injections of once a month but they insist it should only be given once every three months and when I asked about taking supplements in conjunction with intramuscular injections they didn’t seem to be able to tell me whether it was advisable or not. If we could find the cause of the condition then it would be easier to control or possibly cure, instead of using methods developed years ago on a handful of patients.
Hi Jim,
I get mine every 8 weeks but is still not enough. what i have started doing is taking oral supplements around 5 weeks when all the mouth ulcers come back and i start feeling ‘fuzzy’/ taken me a while to find some that work but seems to be doing the trick to get me to the next jab. i do however take 5/6 of the 5000 mcg ones. not sure how much goes through but it is enough to keep me running.
I have just been diagnosed with P A but do not have any of the symtoms apart from my blood samples saying I have it. I have refused the injection have a fear of needles, and asked for the B12 TABLETS. Still waiting for doc to decide.
If you do not have any symptoms tablets might be sufficient. Sublinguals might be a better option than ‘normal’ tablets as they circumvent the stomach.
There are so many b12 supplements on the market and I am confused which one to take to replace my 3 month injection.
Try sublinguals with either hydroxo-/ or methyl-cobalamin. Some brand used by others: Solgar, NOW Foods, Jarrow, Cytoplan, Biotics..
I have been on injections for the ast four years, during the pandemic I was changed to tablets, my levels dropped to 129. I am now back on injections; at no point during my treatment did my levels go above 190. My doctor claims 150 is a suitable level, NHS websites state below 200 is low. I am considering taking further supplement as symptoms have remained constant; in your opinion might this help?
If your level has not risen above 190 you either need much more frequent injections or your injections could not be the right one for you. If you are a member, please call our Helpline for more avdice. Of course you can try supplementing with a good quality sublingual tablet and see if that helps.
I have not yet got pernicious anaemia, but have a b12 deficiency. For many, many years I have been having muscular pains, problems with my body thermostat, depression, etc. I now have peripheral neuropathy and seem to be getting a lot of problems, all put down to my age, 82. Years ago my doctor was warned that, although I did not have PA, I did need to be checked as I had antibodies. I have been put on tablets, one per day for 3 months and then another blood test. I also take Omnerazole tablets for reflux. I queried that the 2 did not go together and was told it was ok. I have read that it is not ok do have stopped the Omneprazole. I feel that, although my b12 has not been low, all my problems are, somehow, associated with b12.
I just don’t know who to ask. This year, do far, I have had 3 UTI’s, a huge tooth abcess, which antibiotics don’t seem to be working, a infected sebaceous cyst. I do have neuropathy and fibromalga. I have seen a geriatric Consultant, a Neurologist and am constantly at the doctors who, I believe, finds me difficult. Do vitamin pills work properly if I have stomach antibodies.
Sylvia Dixon