Sterile injectable Saline : Could... - Pernicious Anaemi...

Pernicious Anaemia Society

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Sterile injectable Saline

dedicatedwife profile image
42 Replies

Could anyone advise me where I can purchase sterile injectable saline that will ship to the UK please?

I’m struggling.

Thank you.

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dedicatedwife
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42 Replies
Nackapan profile image
Nackapan

I thought saline was delivered iV under a doctors instructions for hydrationHow is it used with b12??

dedicatedwife profile image
dedicatedwife in reply toNackapan

dehydrated Methylcobalamin

Nackapan profile image
Nackapan in reply todedicatedwife

Oh okay .

Sounds difficult to obtain.

Are single use ampoules not available .

wedgewood profile image
wedgewood in reply toNackapan

Single use ampoules are obtainable from a small Munich homeopathic manufacturing pharmacy . Arnika . You have to order by emailing them

manufaktur@arnika-apo.de and ask for prices first . Pay by PayPal or bank transfer .

or phone them +4989452468468 They speak perfect English . Quite expensive . I believe there is huge demand .

wedgewood profile image
wedgewood

You can get the saline for injections , to rehydrate the powdered Methylcobalamin from versandapo.de and from apohealth.de

Both Reliable German online pharmacies . I think versandapo is somewhat cheaper . You need to translate versandapo . You can get apohealth in English .

It’s called NaCl 0,9%

But it’s easier to find them using their pharmaceutical reference numbers

The 10 x 10 ml packet ref number is 02737779

The 20 x 5 ml packet ref number is 03040980

Amazon.de have it but will not ship to U.K.

the above saline is the correct type for injection. . There are other types for different purposes . You must get the right type . Made by Braun . Best wishes .

Only obtainable in U.K. with a prescription .

OldmanD profile image
OldmanD in reply towedgewood

Man that is daft. . . . . . . Ye can walk down many UK streets and buy near to any injectable substance that is not legal and made of god knows what but ye cant by sterile water. . . . .

wedgewood profile image
wedgewood in reply toOldmanD

Well that’s how it is -yes crazy that we can’t get it OTC Also that we can’t get our B12 ampoules OTC .

OldmanD profile image
OldmanD in reply towedgewood

I am well aware of the B12 restrictions but sterile water??? . . . . Yes crazy

wedgewood profile image
wedgewood in reply toOldmanD

It’s because it’s an injectable item .

dedicatedwife profile image
dedicatedwife in reply towedgewood

Thank you so much for your kind reply.

I tried versandapo and when I tried to pay by PayPal it refused my payment saying address invalid. I had several experiences like that with other German pharmacies. I assume this means they don’t ship to the UK- unless I’m doing something wrong? Apohealth were sold out.

Many thanks for trying. I really appreciate it.

wedgewood profile image
wedgewood in reply todedicatedwife

I’ll send you instructions how to fill in your address .form .

dedicatedwife profile image
dedicatedwife in reply towedgewood

Oh bless your heart! Thank you!

wedgewood profile image
wedgewood in reply todedicatedwife

I have ordered from versandapo recently — no problem . You are making a mistake when filling out the address form I think .

The following German online pharmacies will deliver B12 depot single use ampoules to U.K. .

apohealth.de. ( in Munich) Site is obtainable in English (Union flag, bottom left on my device ) also deliver World wide.

versandapo.de ( in Leipzig) Site is in German . Use Google chrome to obtain translation . This pharmacy is usually cheaper than apohealth

apotheke-marienbrunn.de ( in Leipzig)

In German . Use Google chrome if you need translation . Also deliver to Australia and New Zealand .

When filling out the address form , you will see that the country is already filled in with GERMANY / DEUTSCHLAND . You must first change your country to “ Vereinigtes Königreich Grossbrittanien und Nord Ireland “. UNITED KINGDOM , U.K. VEREINIGTES KÖNIGREICH however expressed .on the drop-down list . Do this so that your post code and then the rest of your address will be accepted , .

Other wise you will be unable to order,! and will start tearing your hair out !!!

Amazon.de also sell Pascoe and Hevert , but you can’t use the pharmaceutical references to order

The following brands are obtainable

Panpharma ( formerly Rotexmedica ) b12 depot 1mg x 1ml ampoule ( depot indicates Hydroxocobalamin) ref no 16199653. This is the most popular ampoule used by PAS members .

It is the best value , but sometimes /often is out of stock . You can then opt to be emailed to be told when it is back in stock .

If the Panpharma b12 depot ( Hydroxocobalamin ) is out of stock , you may like to consider the Panpharma Cynocobalamin . B12 The pharmaceutical reference number is 16199707 .

Cynocobalamin may need to be injected more often .

Pascoe B12 depot 1.5mg x 1ml ampoules- Packet of 10 ref no 07568672

Pascoe b12 depot 1.5 mg x 1ml ampoules-10 packets of 10 ampoules (100)

Ref no 07568695

The Pascoe are much cheaper per packet if you buy the offer of 10packets .If you inject weekly , or more

that would cover you .

But if you inject less frequently, the ampoules may become out of date .

Pascoe Cynocobalamin b12 Reference number is 03262634 for 1 packet (1mg x 1ml)

Pascoe Cynocobalamin B12 Reference number is 03262657 10 packets 100 ampoules ( 1mg x 1ml);

Hevert b12 depot 1mg x2ml ampoules packet of 10

Ref no 06078368

Hevert b12 depot 1mg x 2 ml 10 packets of 10 ampoules- ( 100)

Ref 06078380.

Use the pharmaceutical reference numbers to order , much simpler than using brand names , and then you know you are ordering Hydroxocobalamin, not Cynocobalamin , which the companies also sell . But some patients like Cynocobalamin B12 . It is the B12 of choice in the USA , and cheaper than Hydroxocobalamin It’s just called B12, NOT B12 Depot

When filling out your address form, do fill in your country first of all . “Germany”/ Deutschland : will be displayed , so you must change this with the drop-down list which will appear , — to U.K./ Gross Brittanien/ Vereinigtes Königreich Grossbrittaniens , — how ever it may be expressed. If you don’t do this , your U.K. address and post code will not be accepted , and you will end up in a tizzy . We don’t want that !

PLEASE BE AWARE OF THE FOLLOWING

Also do remember that now the U.K. has left the EU , there is a limit to the value of goods that we are allowed to import, before tax is due on items coming from the EU . Tax is applicable if the value exceeds about £132.00 , but I’m not sure of the figure , so please look it up . On top of that there is a charge of £8.00 made by Royal Mail for processing it. I’m also not sure of how much the tax is . But a member has been shocked by what she had to pay when she ordered over the limit . . So please be aware of this , and check . I believe that even the cost of delivery charge is included in the total . It was when I ordered something from USA .

Very best wishes .

Please also be aware that we need to be glad that the above pharmacies deliver B12 ampoules to U.K. .Because strictly speaking they are not allowed to send any item to a country where that item is prescription only . B12 ampoules are prescription only in U.K. ( but not in Germany ) But I suppose they do this because they know that B12 injections are totally harmless, indeed , life-saving to P.A.patients , unlike many other prescription medications .

dedicatedwife profile image
dedicatedwife in reply towedgewood

I’ve tried again but failed. Where am I filling in the address form? Once in PayPal? Or do I have to create an account with the pharmacy? I can’t find where I ought to do it. Sorry to bother you again.

helvella profile image
helvella in reply todedicatedwife

I buy things from Versandapo - and I created an account with them ages ago. The critical thing is to put in country as the first part of entering your address.

I pay using Paypal with my ordinary UK Paypal account - I don't remember doing anything special to it.

B12again profile image
B12again in reply todedicatedwife

When I had problems with Versandapo initially, I found I had not filled out my account profile correctly.

dedicatedwife profile image
dedicatedwife in reply towedgewood

Thank you so much! I finally did it. I didn’t realise I had to create an account first.

wedgewood profile image
wedgewood in reply todedicatedwife

Not many German online pharmacies will ship to U.K. since Brexit . There is extra paper work for them shipping to non EU countries . Most of the German online pharmacies ship only to EU countries . But since we left the EU , it’s made getting our supplies more difficult.

wedgewood profile image
wedgewood in reply todedicatedwife

It is very remiss of Oxford Biosciences to give instructions for obtaining saline that are no longer correct . Neither German online pharmacies that they quote deliver saline to U.K. anymore . ( since Brexit)

JohnnyConger profile image
JohnnyConger in reply todedicatedwife

I just ordered from apodiscounter, Hevert 1m ampoules I paid via bank transfer, filling out the boxes with the info they emailed me. I have had the confirmation email telling me it is on the way.

wedgewood profile image
wedgewood

Bodfeld.de no longer ship to U.K. , so Oxford Biosciences who sell powdered Methylcobalamin should correct their information .

Guyswife profile image
Guyswife

try exchange supplies . Org

wedgewood profile image
wedgewood in reply toGuyswife

I believe that saline they offer is not a recommended one for rehydrating powdered methylcobalamin.

Guyswife profile image
Guyswife in reply towedgewood

If you go on their website it gives you what to buy & links to purchase.

Sleepybunny profile image
Sleepybunny

Hi,

Some forum members think there may be a risk of contamination with a multi use vial.

Have you tried to get treatment from NHS?

Some links that may be useful if GP reluctant to treat B12 deficiency adequately

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Above link has letter templates covering a variety of situations linked to B12 deficiency.

Thread about Patient Safety, has links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

If you have a PA diagnosis or suspect you have PA , have you considered joining PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum. It's open to people worldwide.

pernicious-anaemia-society....

You do not need a PA diagnosis to join.

More B12 info in pinned post "Various PA/B12D resources".

I'm not medically trained.

dedicatedwife profile image
dedicatedwife in reply toSleepybunny

Hi

My husbands B12 levels were at 56!

The GP was not happy to prescribe daily injections. We’ve been supplementing my husband with daily hydroxocobalamin daily since the beginning of December- unfortunately his neuropsychiatric symptoms are not showing much improvement.

We did a methylation DNA test. He does have a mutation in the MTHFR gene amongst other things.

The practitioner recommended Methylcobalamin for him but it’s proving difficult.

Thank you very much for your help and advice.

Sleepybunny profile image
Sleepybunny in reply todedicatedwife

"My husbands B12 levels were at 56"

If you mean 56 ng/L for serum B12 that is really really low.

My understanding is that with neuro symptoms present, he should be on every other day loading injections until his symptoms stop improving then a B12 maintenance injection every 2 months.

There is no set time limit as to how long these every other day loading injections can continue for (could be weeks even months of them).

His GP can find this pattern in BNF book Chapter 9 section 1.2 or in online BNF entry for hydroxocobalamin (in Indications and Doses section).

bnf.nice.org.uk/drugs/hydro...

When you have the time and energy, I suggest you search online for this UK health document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly including the Background Information section.

Also search online for local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland) and compare them with NICE CKS document mentioned above.

List of ICBs England

nhs.uk/nhs-services/find-yo...

If you can't find local B12 deficiency guideline online, try a search of forum posts here for them. Best bet may be to submit a FOI (Freedom of Information) request to ICB or Health Board asking which b12 deficiency guidelines they are using and for a link to or copy of them.

Some of these local B12 deficiency guidelines are not as helpful as they should be. See blog post below.

b12info.com/gloucestershire...

NICE (National Institute for Health and Care Excellence) are due to publish a new B12 deficiency guideline in March 2024.

Search for "NICE draft B12 deficiency guideline" if you want to see what NICE are working on.

"The GP was not happy to prescribe daily injections. "

Did GP explain why?

Has he had any loading injections?

Loading injections are a set of B12 injections given close together at start of treatment to try to quickly increase B12 levels in blood.

How often is he getting B12 injections from GP now?

See Point 1 in letter writing link in one of my other replies. It's about under treatment of B12 deficiency with neuro symptoms.

I think putting queries about treatment/diagnosis into a short, polite letter makes things harder for GP to ignore.

If you have time, this UK B12 document is worth searching for and reading thoroughly.

It's aimed at doctors.

"BSH Cobalamin and Folate guideline"

Vital to get adequate treatment or there is an increased risk of developing permanent neurological damage. In severe cases, the spinal cord may be affected.

If GP is reluctant to give adequate treatment then may be worth discussing this article with them.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Two useful B12 books

Published a few years ago so some bits may need updating.

What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

There may be copies of these books available from local library service.

Thread where I left detailed replies.

healthunlocked.com/pasoc/po...

From years of being active on this forum, it's my impression that many UK forum members struggle to get adequate treatment.

I fought for years to get treatment with GPs who didn't understand and I was forced to treat myself.

dedicatedwife profile image
dedicatedwife in reply toSleepybunny

I’ve been working with a lovely woman called Tracey Witty from B12onfo.com

She preempted that the doctor wouldn’t be forthcoming (despite NICE guidelines- and she was correct!) - we paid for and administered the B12 ourselves.

Yes- 56 was very low. His long list of dramatic neuropsychiatric symptoms are also very severe. His personality change is a 180 from the man he used to be. My daughter and I have lost the man we adored. I’m trying very hard to rescue him under absolutely dire circumstances.

I don’t know if I’ll succeed but I’m trying very hard.

Thank you for the information and support.

Sleepybunny profile image
Sleepybunny in reply todedicatedwife

I'm glad that you have some support and hope that your husband gets the help he needs.

Has he had recent test results for folate, ferritin (and other iron tests) and Vit D?

Forum members often report these deficiencies as well as B12 deficiency.

Thyroid problems are also quite common among forum members here. Might be worth putting any thyroid results on Thyroid UK forum on HU along with an outline of his story. Some people experience symptoms of thyroid disease with normal range test results and it can have an impact on mental health.

Link about iron tests

labtestsonline.org.uk/tests...

Full blood count (FBC) results may also be useful.

Link about Full Blood Count

labtestsonline.org.uk/tests...

Doctors often look for signs of macrocytic anaemia when B12 deficiency suspected.

This is a type of anaemia where red blood cells are larger than normal and can be associated with both B12 deficiency and folate deficiency.

I suspect that some GPs don't know that many people with B12 deficiency do not have macrocytic anaemia.

Iron deficiency can lead to red blood cells that are smaller than normal (microcytosis).

In a person with both B12 (or folate) deficiency with iron deficiency, red blood cells may appear to be normal size on Full Blood Count because effects of iron deficiency can mask effects of B12 (or folate) deficiency.

Link about Macrocytosis

Aimed at doctors

patient.info/doctor/macrocy...

In a person with both folate and B12 deficiency, B12 treatment should be started first. Treating folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems. See Cautions section in next link for more info.

bnf.nice.org.uk/drugs/folic...

Was he tested for PA and coeliac disease?

Both auto-immune conditions that can lead to B12 deficiency.

Testing for PA

pernicious-anaemia-society....

Thread about tests for PA/B12 deficiency

healthunlocked.com/pasoc/po...

Diagnosis of coeliac disease

coeliac.org.uk/information-...

There is a NICE guideline for coeliac disease.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Links about B12 deficiency and mental health

stichtingb12tekort.nl/engli...

b12info.com/mental-health/

There are many research articles online that suggest an association between B12 deficiency and neuro-psychiatric symptoms. Also some for folate deficiency but I think this is less common.

Help for GPs

May be GP could look at some of these articles....

1) PAS page for health professionals.

GP could join PAS as an associate member, no charge.

pernicious-anaemia-society....

2) Does his GP and any specialists he sees know about Club B12?

It's a group of researchers and doctors who are looking into B12.

club-12.org/

They have regular zoom meetings.

3) Good articles to pass to GP

Recent BMJ article B12 deficiency by B. Wolffenbuttel

Vitamin B12

BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)

Cite this as: BMJ 2023;383:e071725

(One of the few doctors in my personal opinion who seems to really understand B12 deficiency)

bmj.com/content/383/bmj-202...

Interesting to see varying attitudes of people who wrote responses to above article.

bmj.com/content/383/bmj-202...

He also wrote a recent article for PAS (Pernicious Anaemia Society).

Only One Chance

pernicious-anaemia-society....

B12 article from Mayo Clinic in US

Aimed at researchers and doctors.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1

Affiliations expand

PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002

Free PMC article

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

dedicatedwife profile image
dedicatedwife in reply toSleepybunny

Thank you

Grundle_Jones profile image
Grundle_Jones in reply todedicatedwife

I have gone down this rabbit hole before. I hate paying a middle man to compound the Oxford Biosciences methylcobalamin into injectable saline we can't buy here in the US either.

I also worried about how sterile it would remain through multiple uses or just mix one shot at a time - either way maybe the company I order a 10ml vial from might ship to the UK - you fill in a questionnaire, they have a doc write a prescription and using the 1st time order coupon each time (don't sign up for reoccurring billing - or maybe you'd want as much as possible without having to reorder each time)

AgelessRX.com - costs me $85 with shipping for 10ml - I do a shot every week.

Best of luck 🤞

WIZARD6787 profile image
WIZARD6787 in reply toSleepybunny

Multi use vials are the standard in USA and have been for over 50 years. All the vaccines are drawn from multi use vials in the USA. Diabetics self inject using multi use vials and insulin syringes in the USA.

I am 68 years old and have not ever seen a glass ampule.

B12again profile image
B12again

If you are getting powder Methylcobalamin from Oxford Bio Sciences then on the order form online ask them to enclose a 10ml phial of what you’re asking for. It’s free and correct amount to mix into the powder, they won’t add it unless you ask. It all comes with instructions also.

wedgewood profile image
wedgewood in reply toB12again

That’s useful information - thanks .

B12again profile image
B12again in reply toB12again

The price shown on the listing is not inclusive of VAT.

wedgewood profile image
wedgewood in reply toB12again

But I’m surprised that they do that, because Saline for injection is only available on prescription in U.K.

B12again profile image
B12again in reply towedgewood

Yes, lots of confusion out there. Received my first order from Oxford’s a couple of weeks ago. Previous to that had talked to them on the phone and were very helpful. One bottle of powder plus 10ml of the saline. Popped in the saline solution, gently role the mixture a little to aid mixing (not really necessary), wait about 1 hour and it’s ready to inject. 🙂

dedicatedwife profile image
dedicatedwife in reply toB12again

I’d already ordered unfortunately and I’m failing to get hold of them by phone or email- but thanks for the info.

wedgewood profile image
wedgewood in reply todedicatedwife

“Water for injection “ is not the same as saline for injection . Water for injection is not anti-microbial . It’s obviously safe for immediate use, but not for mixing with powdered methylcobalamin which will be kept for a month .

dedicatedwife profile image
dedicatedwife in reply towedgewood

Don’t worry I ordered sterile injectable saline

wedgewood profile image
wedgewood in reply todedicatedwife

I was honestly getting worried on your behalf . I know “ water for injection “ sounds safe , but it’s not safe enough to keep for a month with the methylcobalamin powder dissolved in it .

dedicatedwife profile image
dedicatedwife in reply towedgewood

Thank you. All is well. 🙂

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