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Why in Dutch guideline for PA and B12 deficiency emphasis is just on IM injection and SC injection not mentioned?

Hamayeshguy profile image
16 Replies

I'm wondering why in dutch guideline for PA and B12 deficiency there is no SC injection. Is there any difference between IM injection and SC injection results?

Why frequency of injection is different than NGS NICE guideline?

In my experience more retention of B12 is the only key factor in symptoms improvement and SC since it's absorption is slower can have more retention in comparison with IM. Maybe I'm wrong but I think slower release of B12 can help more retention as our body discharge 98% of injected B12. So why dutch guideline emphasized on IM and not even mentioned SC injection.

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Hamayeshguy profile image
Hamayeshguy
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16 Replies
wedgewood profile image
wedgewood

I think it’s because it is said that I.M. injections are effective more quickly than sub-cut . But I don’t really know . I,M . Is the only injection method used in U.K. by the medical profession for B12 injections . But as we can see on the packs of German B12 ampules , sub-cut is a recommended method in Germany . We also hear from members who use -sub-cut and find it effective.

Perhaps other members know more .

Hamayeshguy profile image
Hamayeshguy in reply to wedgewood

Maybe subcutaneous injection result not be acceptable since hydroxocobalamin is active form of B12 and before reaching blood stream can be used by some cells in the route to blood stream, but it's just my guess and not scientific. In my experience with B12 slow release pills I feel it's working since it's slow release in comparison with sublingual. Sublingual doesn't work for improvement of symptoms for me at all and with that sense maybe subcutaneous work better because it is continuous and it can have more retention in our system. I'm looking for a way to release continuously B12 but in low rate but I couldn't find it yet. I thought about transdermal patch but it's not matured method yet. Along with our routine injection I think we need continuous presence of B12 in our body. Maybe I'm wrong but it worth to try

deniseinmilden profile image
deniseinmilden in reply to Hamayeshguy

No harm in trying it for yourself.

mauschen profile image
mauschen in reply to wedgewood

I was taught many years ago that because of the destruction of the micro villi in people with true PA rather than transient B12 deficiency, they could not absorb oral medication. Plus, the amount of liquid to be injected, plus the viscosity, rendered the subcutaneous unstable as a route of administration.Over the years, it’s possible that the pharmaceutical industry has produced oral medication which is absorbed in a different part of the digestive tract. Furthermore, a more suitable sc injectable might have been produced .

I did however, find an article in the Cochrane database which might provide food for thought. However, I would advise caution in the interpretation of it.

ncbi.nlm.nih.gov/pmc/articl...

wedgewood profile image
wedgewood in reply to mauschen

Thanks for your post .Interesting to read what you were taught about oral supplementation What caught my eye in that Cochrane report was that the participants were referred to as having “B12 deficiency”. not Pernicious Anaemia . Pernicious Anaemia is referred to , but not in connection with the participants. I have a confirmed P.A. diagnosis

( Positive Intrinsic Factor Antibodies test)

Before I found out that i could get B12 ampoules from German online pharmacies , i took B12 tablets in HUGE doses — both sorts .The normal ones to swallow and the ones that one keeps under the tongue till they dissolve . I was a really desperate person , taking really massive amounts. (because one injection every three months was grossly insufficient ) But to no avail whatsoever And i tried for many weeks … So i am really very sceptical that oral B12 can replace injections for all P A patients I’m fearful that PA patients might have tablets forced on them, to the detriment of their physical and mental health ….

I think that Pernicious Anaemia is a complicated condition . We read on this forum that some people find that Sub -cut works for them . I need weekly I.M.injections to keep well .Some need daily and some are fine with 3 monthly , and anything in between . But the NHS will not entertain that ….

I’m intrigued by your nom de plume . I was married in Germany for many years and my mother in law always called my daughter “Mäuschen” Best wishes .

mauschen profile image
mauschen in reply to wedgewood

I have recently returned to Scotland after traveling for more than 26 years, 23 of those years were spent in Germany.Like you, I have PA, confirmed by a Schilling’s test and bone marrow aspiration of the sternum and iliac crest when I was 28 years of age.

Understanding of PA and it’s treatment has not improved over the years and until funding is made available, progress is unlikely.

The complexity of our illness requires a complex approach. It has taken me more than 35 years to reach a plan which keeps me ticking over. Why so long I hear you ask, because our bodies are in a constant cycle of change. Change has to be accounted for and adjusted for in our treatment plans. When I was younger, I barely survived from month to month, desperate for my IM injection. Now that I am in my senior years, bimonthly is enough.

It is not enough to replace B12, there is a plethora of vitamins and minerals which need to be kept in balance. Doctors will not help you to do this and it can be expensive to monitor with private tests.

With time, one recognises the needs of the body but by that time, if you survive, you are already half dead.

My grandson was diagnosed with B12 deficiency aged 21 years. I know he has PA but no further investigations were carried out.

He was treated with daily injections which were tapered off as his blood levels returned to normal, then never seen again.

We need to keep fighting for recognition of this debilitating illness or our young ones won’t stand a chance!

in reply to mauschen

Mauschen,Thank you for contribution to the website.

"We need to keep fighting for recognition of this debilitating illness or our young ones won't stand a chance"

A statement that couldn't be more true.

Nackapan profile image
Nackapan in reply to mauschen

My dsughter was undiagnosed for many years. Recieved her first b12 blood test at 22 when I blocked her discharge from hospital.

Too little too late gives big problems for life

My first ever check I was 58

Mu mum even older.

Ax I've said like a broken record to my surgery

Medical friends

It should be standard on a blood form

Family history noted

Results acted on

Nackapan profile image
Nackapan in reply to mauschen

I agree. Mt daughter had years if ull heath befirexa diagnosis .A disgrace as b12 never tested until I blocked her discharge from yet another admission to hospital.

With no definitive PA test thuses with or without a diagnosis should recive the same treatment going on symptoms.

Uts there in the guidelines.

I trued all sorts of high dose oral treatments .

None of which did a thing apart from empty my purse.

Dietary b12 deficiency is easily diagnosed if they ask what you eat.

Not 'rocket science '

I have IM b12 abd sc B12

Both are effective.

Initijayy I alternated them to make sure .

Sometimes the IM ones go in quicker but seem to leave my system quicker??

Other tines seemingly no effect from either

After 2 years for me they both work.

Oral sublingual

Sprays capsiks

Different makes fifferwbr sorts don't.

Nor does copious amounts of liver.

Just raised my cholesterol.

I agree nutrients need to stay in balance.

I've never in my life needed iron before.

I do get regular bloods from the NHS

But no help with nutrition.

I've always had an excellent diet.

My friends often comment I 'shoukd' be the picture of health .

I'm pale so pale

Always had s good complexion abd skin even as a teenager .

My shin is so dry my scalp itchy sbd sore ect

So that report shoukd actually just be used to see who csn absorb oral b12 and why?

I've read that before.

Probably when I was rattling g with b12 tablets I between injections

Nackapan profile image
Nackapan

I think it depends on if its licensed for sc of not.In the UK I'm prescribed b12 ampoules for self injection sc 'off label'

The nurses are not allowed to administer by subcutaneously as not ' covered ' to do so.

Would not teach me either method.

So guidelines can only be written in what administration is licensed perhaps.

I've had IM injections and subcutaneous injections fof well over a year now .

In my personal experience I find little difference.

I was hoping the IM would last longer but it doesn't.

The only thing i notice is for me as the nurse does the IM ones they can go from almost pain free to very painful lezving nasty bruises .

It can go in more quickly gibknv z big of x 'rush' but not always.

deniseinmilden profile image
deniseinmilden

Because IM has been proven in the majority to work well and is easy.

The initial B12 research work was done decades ago, and with B12 being able to be produced generically, outside of brand funding constraints for so long, no one has the money to publicise any more recent trials work that has been done - it is a very expensive thing to do - and I am not aware of anything that shows that SC is better than IM so it is unlikely to happen. I guess there's a degree of "if it ain't broken, don't fix it".

There is a cost, nurse time and uptake advantage, of pills over jabs so there has been investment in advertising to Drs to prescribe pills rather than injections over the last few years but, as we have seen here, this is at significant patient cost - which will inevitably lead to greater NHS costs and untimely deaths.

It's lucky for you that some pills have some effect for you but they are definitely not a panacea, and as you are still suffering they obviously aren't even fully effective for you - much less so for most of us who are B12 deficient, even if people don't have PA.

Injections are often the only solution to the problem, be it IM or SC, it doesn't seem to matter.

Hamayeshguy I didn't get a chance to reply on your message about poor sleep but do wonder if you have had your vitamin D and magnesium levels checked? Both of these have a big impact on sleep, particularly vitamin D, and are needed for the efficient use of B12. Unless you are on anticoagulants it is important to take vitamin K2 along with D3 if you do need to supplement.

Nackapan profile image
Nackapan in reply to deniseinmilden

I might be wrong. I thought sc was initially used then chsgrd to IM in the assumption they would last longer?

No research yo back this up

But logically would make sense if they did.

Sc or IM at home would be cost effective on nurses time.

The nurses are bound by policy in this as wouldn't show me either method. It wax the Gp who took the responsibility in the end to sanction a prescription and sc at home.

I've offered myself for trials research as has my daughter for b12 and many different conditions at Addenbrookes.

No interest yet

deniseinmilden profile image
deniseinmilden in reply to Nackapan

It all depends on who you speak to and about what, where, whether nurses are sanctioned to teach people to do self injections or not. In some cases, like yours, it is almost wrapped in mystique and yet others who are much less able are given the kit, a quick run through and packed off home to look after themselves (even when they are really not able to 😔).

It seems it's all a lottery.

At least in your case sense has prevailed.

deniseinmilden profile image
deniseinmilden in reply to Nackapan

Thank you for your other comments - sorry it's taken a while to get back to you: I'm having a rough day, probably a combination of doing too much yesterday and forgetting a Vit D tablet or two this week.

If giving injections to animals we usually use SC as the slowest absorption option because the lipid (fat) layer in/under the skin holds the solution for longer and there are less blood vessels to take it away.

IM is next quickest because muscles have a good blood supply and very little fat, except around the larger veins.

IV injections are almost immediately transported all around the body in the blood stream.

If you want to visualise it think of rind-on back bacon, where the rind is the skin, then you get the sub cutaneous fatty layer between that and the eye muscle, the meat. A cross section of a beef joint will show you how a small amount of fat protects and lubricates the larger veins in the lean muscle mass.

I found this interesting (if you're into that sort of thing 😜😁), fully referenced article on the Exchange Supplies website. I didn't find anything about the place of IM injections in the history though but it probably was more that it wasn't relevant to their topic.

"The history of the syringe" exchangesupplies.org/articl...

Have a good evening! x

Nackapan profile image
Nackapan in reply to deniseinmilden

Sorry to hear you've had a rough day.

I was in bed by 1930hrs

Cats happy as do rainy yo be in and around me.

Having 'drifted through the day half doing things.

Will inject b12 a.m

Interesting read.Not managed it all yet!!

Sc in my experience b12 injected in the stomach goes in quicker . Im told same for insulin.

I still have IM in the mix just incase

Better day tomorrow

👍

deniseinmilden profile image
deniseinmilden in reply to Nackapan

I should be OK again tomorrow 🤞, I just took opportunities to do things for myself yesterday as well as being asked to do extras for work and looking back I'm surprised I survived it all, I did so much! 😁

Both my guts and heart rebelled at the number of hours I was on the go and while it makes me feel fairly universally grim if they both kick off together, at least it's not one then the other and I've rested both together.

It's been good to have a "cat day" hasn't it! We're currently all awake and my two are tearing about together now, giving a fluorescent orange mouse hell, up and down the stairs! Suits me - it means we'll all crash out asleep again soon!

Sleep well my friend! x

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