Hi all, I was recently diagnosed with pernicious anaemia, by my consultant who is treating me for vasculitis. I feel very fortunate that I have this consultant as having one diagnoses is bad enough... But two is just not good. But he is amazing and I'm feeling so much better despite being on loads of tablets and weekly rituximab infusions.
My question is I notice that most people seem to be on 3 monthly injections, where as I have had the loading dose and now I am on monthly injections. The nurse at at the GP surgery said I'm the only one she has ever come across on monthly injections, I just wondered if anyone else is?
Thanks X
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HFox
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I'm new here, not a doctor, trained in anything etc. but the 3 month thing is ridiculous, sounds like you've got a good one there, if monthly works for you then that's great, I guess only time will tell. I had my six loading doses and two weeks after crashed and now can't stand up straight, walking into walls, etc. - am hoping that's the effect of the B12 but could be the opposite, got another set of loading doses coming and going back on Tues to see if they'll put me on the proper loading for when there's neuro issues too which is supposed to be every other day until there's no further improvement, not just two weeks. Cos I don't want to be permanently like this.
So 3 months is just what people get mostly, which is why many on here self-inject, some need it every other day, it's like filling up your car with petrol four times a year but expecting to drive it every day.
I'm sure others here will reply with links and stuff - I just got all the B12 books on Kindle & making my way through the first - Could it be B12? Amazing world opening up... worth doing your research on this and connecting the dots cos everyone will have different needs:
Thankyou, in all honesty, I haven't done as much research into this as I should. Because I'm dealing with the vasculitis as well it's difficult to know which one is causing what symptoms!
But I will research and hopefully I will continue to feel better. I'm so grateful to my consultant, he is really really good. It's a shame they aren't all like him!
I'd never even heard of B12 before a couple of months ago but luckily there's forums like this with lots of lovely people sharing which helps piece things together, and B12 certainly seems something that covers a wide range of circumstances and issues.
Sounds like you've got your work cut out, wish you best on your journey of discovery & all I can recommend is just ask - the more we share, the more we learn and the more we can teach!
• in reply to
I'm pasting below the reply Sleepybunny posted to my original question so some particular to me but some very good links to start off with there:
Hi,
Thank you for sharing your story, I'm sure at lot of forum members can relate to aspects of it.
I'm assuming you're in UK because 6 loading injections over 2 weeks followed by injections every 3 months is a pattern of treatment found in UK. It's given to those with B12 deficiency without neuro symptoms.
"I asked one of the nurses who injected me what happens next and she said you get injected every three months "
What the nurse doesn't appear to know is that in UK people with B12 deficiency with neurological symptoms should have the following pattern of treatment....
A loading injection every other day for as long as symptoms continue to get better then injections every 2 months
Do you have neuro symptoms eg tinnitus, tingling, pins and needles, memory problems, balance issues?
"read about the guidelines which say they shouldn't stop if there's neurological issues until improvements stop so I was going to mention this to the doctor on weds"
GP can find the info about treatment for B12 deficiency with neuro symptoms in
1) BNF British National Formulary Chapter 9 Section 1.2
GP will very likely have a copy of BNF on desk or bookshelf.
Flowchart outlines when PA (Pernicious Anaemia) and Antibody Negative Pernicious Anaemia can be diagnosed in UK. Flowchart makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment.
Have you had an Intrinsic Factor Antibody test?
Do you have a diagnosis of PA?
PAS (Pernicious Anaemia Society)
If you have a diagnosis of PA or suspect that PA is a possibility , might be worth joining PAS. They can offer support and info on PA. You might be able to speak to them before your appt on Wed.
There may be stories on Martyn Hooper's blog that are relevant to you including how PAS has supported people seeking a diagnosis and correct level of treatment.
Hi HFox is it possible your injections are cyanocobamalin B12.
I was started on cyano 46 years ago because at that time it was the only one available and because I couldn't "cope" with the Hydroxocobamalin when it was introduced in the 1980s I have continued on the cyano and have it now every three weeks
My friend is on three weekly because his doctor actually seems to know that she needs to treat her patients by symptoms not by the book. But it has to be said he is questioned each time he goes to the nurse for it.
Yes I'm prescribed monthly injections by my gp. I've no idea why but I was never given loading doses but went straight onto injections every 2 months. When I asked my gp for more frequent injections as my energy was running out before the next injection he said we'd give monthly a try. That was over a year ago and happily he's continued allowing monthly.
ruffnut - that is not the standard treatment regime in the UK. Not sure where you are?
In the UK the standard treatment for a B12 deficiency / PA is:
With no neurological symptoms:- injections of hydroxocobalamin every other day for 2 weeks then injections every 3 months.
With neurological symptoms:- injections of hydroxocobalamin every other day until no further improvement (with a review at 3 weeks) then injections every 2 months.
There is no US wide guidelines as far as I know but people have mentioned having a weekly injection of cyanocobalamin for several weeks then it reduces to 1 injection per month.
Not everyone feels good enough on these regimes so some lucky folks have managed to get more frequent injections.
There is no need to take high dose folic acid (eg 5mg) unless you have been diagnosed with a deficiency and prescribed this by a doctor. This is often only for a few months then it is stopped. Many of us here however take a lowish dose (eg 2-400mcg per day) to just make sure we have enough to make best use of our B12!
taka - interested in your response there as I'm also still unsure about the relationship between the B12 and anything else you need to take as well in order for it to work best.
I'm going back to the doc tomorrow to ask for my 2nd set of loading doses to be converted into the proper ongoing as per the with neuro guidelines - my folate level's 5ng/mL [4-20] and intrinsic factor 2u/ml [0-24] which although in range, are like, y'know, pretty low - not that I have any idea as to what the numbers mean, I'm just looking from a mathematical point of view.
I've never seen anti intrinsic factor antibody results before so I'm not 100% sure what a result of 2 means - possibly a negative result. If so, since ~40-60% of people with pernicious anaemia test negative you may still have PA! Refer them to the BSH guidelines ( pernicious-anaemia-society.... ) if they try to use this as an excuse not to treat your deficiency / PA properly.
In short, without adequate folate, your B12 cannot do a major part of its job biochemically, no mater how much B12 is sloshing around in your body. Folic acid is changed into another chemical that (in conjunction with B12) is needed for DNA / RNA synthesis. Without enough of both folate and B12, macrocytic anaemia and a bunch of symptoms can occur.
I'm not a medic but as I understand it most of us can easily absorb enough folate/folic acid from our diet so there is usually no particular need for males to supplement. Folate/folic acid is found in various things including green leafy veg, pulses, beans and some other fortified foods. See bda.uk.com/foodfacts/FolicA... for a bit more info. Sorry this link is a bit female orientated!
Iron is also needed to produce healthy red blood cells. It is central to the oxygen /CO2 transporting bit of the RBC's job. Iron deficiency (even without iron deficiency anaemia) may lead you to feel pretty dire with many similar symptoms to a B12 deficiency. Consequently it may be an idea to have your iron and or ferritin (an iron storage protein) levels checked too. It is safest to supplement iron (if necessary) under medical guidance as taking too much iron can be dangerous.
Many people in the UK are low/deficient in Vitamin D so it may be an idea to check this too. Feeling exhausted and aches and pains are among the common symptoms. NHS recommends taking a low dose (10mcg / 400U daily for adults) for the winter half of the year in the UK. nhs.uk/Conditions/vitamins-... so you may want to investigate this anyway as we head into winter. If you are deficient and need to take higher doses this should be done under medical guidance as having high levels can be dangerous.
I personally seem to have some degree of absorption problems which have led to both low Vit D and iron (on GP prescribed treatment for both) and regularly measured only just in range for folate. I looked into supplementing and decided a low dose seemed reasonable to take without too many issues to make sure I don't slip into deficiency at any point. I now take folic acid every day which has raised my levels a bit higher (still well in range). Couldn't find any 200mcg tablets so 400mcg cheap and cheerful ones it is!
Some info on investigating safety of common supplements:
Wow thanks for all the further info taka - I've got reams of notes now I've got to cut down to fit in my 10 minute appointment tomorrow lol, mostly it's from the letter-writing help on b12d to get across but my entire life history is now making a lot of sense so pretty sure my body's not good at converting fat and carbs into protein. It's good to know, but sure could've done with knowing before... yeah I know, such a PAS n00b!!!
Hi, I'm on monthly injections, tho I feel two weeks would probably be better as I feel exhausted in the two weeks before my next one is due, tho I am only recently diagnosed so maybe it will take a while to settle down, a lot of my neurological symptoms seem to have eased off, memory problems, balance, ringing in my ears, but in the two weeks before I'm due my next injection I have pins and needles again, brain fog and extremely tired, so I'm quite glad my GP is giving me monthly injections as I wouldn't managed to go so long. Hope your feeling better soon.
Is it possible you are on monthly injections due to the rituximab treatment? Looks like one of the possible side effects of that can be anaemia so maybe they are giving you monthly injections just in case? Whatever the reason I hope it helps.
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