I've had the loading dose of 6 injections and noticed improvement along with great tiredness on the day after the jab. As I have neuro symptoms I asked for further injections every other day as laid down by the NICE Guidance. GP was shocked at the thought of so much b12 and I had to show her the guidance in writing. Then she reluctantly agreed to give me two more week's worth. Last week I should have had the last three injections but the nurse couldn't fit me in!! so I only had one I.M. Improvement has slowed down now but not stopped.
GP has 'taken advice' from a haematologist who says in my case, as I have a serum b12 in normal range, it is unlikely that there will be any further improvements after 4 week's treatment.
Is it the case that there are known recovery rates for different serum b12 starting points.
Any views would be welcomed.
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Damseltree
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I've not heard of any statistics of recovery rate. I was told by a neurologist most healing done in the first 6 months. I'm glad that not correct for everyone as I'm still making improvements 10 months in.
Surly if they are helping you maintenence of every 2 months should be given.
No, there is no apparent connection between recovery rates at initial B12 values.
The haematologist is talking rubbish. Because he/she is blinkered. They believe that the haematological consequences of a deficiency are all that matters. And those should, indeed, clear up after three to four weeks. They have absolutely no idea at all about the neurological consequences.
Ask to see a neurologist. You will abide by their opinion, but need your continued loading doses while you wait.
Yes, as fbirder said, GPs don't seem to understand the difference between the haematological and the neurological requirements. I just ran into this with my Doctor yesterday and thankfully she has finally agreed to refer me to a Neurologist. The issue as I have understood it is to have the blood concentrations so high that you get it through the blood-brain barrier, etc, into the nervous system to try to halt and hopefully repair the demyelination. We also had another discussion about her not being able to prescribe outside the guidelines and it was interesting to find out that those guidelines are set by the Pharmaceutical manufacturer - I thought it was a Medical Board (or whatever it's called) decision. I would like to have the NICE Guidelines if you/someone could give me a link. Thanks.
B12 crosses the blood-brain barrier via the same mechanism whereby it gets into all cells so that shouldn't be a problem. The main problem with neurological as opposed to haematological recovery is one of timescale.
Blood cells normally regenerate after three months and the body has processes to speed this up (because loss of blood cells isn't a rare occurrence). So it doesn't take long at all for the blood to return to normal.
But nerve cells (and the cells that make up their myelin sheath) regenerate very, very slowly. I severed one of the nerves in a finger in my 20s and it took 10 years before feeling was back to normal. So any damage caused by a B12 deficiency will take a long time to repair itself.
Guidelines for dosing frequency aren't set by the manufacturer. Otherwise they would want to maximise sales by making it as often as possible. The NICE guidelines are here - cks.nice.org.uk/anaemia-b12... Various people have spent a lot of effort trying to pin down the scientific basis for those guidelines, and why they have been changed in the past. With no joy at all. It seems that they were plucked from the air by an accountant.
NICE say they were based on evidence from the BCSH and recommendations in the BNF.
The BCSH say their recommendations are those of the BNF.
The BNF say that their recommendations are based on those of NICE and the BCSH.
Thanks. It frightens me that they are so casual about treatment when the neurological damage is so difficult to repair. I wonder if the pharmaceutical companies aren't trying to sell more because their profit margin is so much higher on the other drugs used when our condition is misdiagnosed. I was staggered at what the lady in the U.S. was having to pay for B12 though. I'm in NZ.
This is a common belief - that 'Big Pharma' have total control over what doctors prescribe. It is totally wrong.
One of the most common claims is that Big Pharma bribe doctors to prescribe antidepressants rather than B12 injections. But it just doesn't add up.
Here in the UK just about every antidepressant you might get prescribed isn't made by Big Pharma. Their patents have expired and you will be prescribed a generic version, manufactured by 'Teeny-Tiny Pharma'. And it will cost the NHS very little to buy those pills.
To buy 30 capsules of fluoxetine (generic Prozac) from Almus Pharmaceuticals (just one of 19 different companies that sell it, all for the same price) costs the NHS just £0.93 Almus Pharmaceuticals made a profit of £260,000 in 2018. There are about 7000 GP practices in the UK.
That means, if Almus Pharmaceuticals were to bribe every GP practice in the land it could afford to give each one £37.
How many GPs would risk losing their license for a part-share on £37? Would small pharma risk losing their business just to sell more pills at 3p each?
Doctors hand out antidepressants rather than give B12 injections because they do not understand B12 deficiency. Not because it allows them to buy a yacht in the south of France.
My Doctor said directly to me that she has to follow the prescribing recommendations the manufacturers put on their products. I suppose if the people who make them say this is how they are to be used then that is what is accepted by the medical management, anything else would be illogical. We seem to have been presuming that the prescription practices are the responsibility of the medical system when, perhaps, it is not. Our efforts to get change may be misplaced - it might be more productive to tackle the manufacturers to get them to broaden the prescribing recommendations than keep on hoping the doctors will deviate from them.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Are your GP and haematologist aware of the potentially severe consequences of under treatment?
I agree with fbirder that seeing a neurologist is a good idea.
I used to put referral requests into a brief, polite letter to GP along with evidence that supported request eg symptoms, test results, family/personal medical history, extracts from UK b12 documents etc.
GP does not have to agree to request though.
Be well prepared for any neuro appointment; sadly ignorance about b12 deficiency can exist among neurologists. I can vouch for that.
I am not medically trained. More B12 info in pinned posts on this forum. I've written some very detailed replies on other threads recently. May be worth searching for them.
I don't talk in detail about my self treatment but I will say that I need a lot more B12 than in the UK guidelines and my symptoms start to return within a few days of an injection.
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