can anyone help with methylecobalamin

[safluy]

Hi all, I am new to the site. I have PA from Postive IF test (first time)and B12 deficiency. I gave myself extra injections when the GP would not follow guidelines/ I used methylecobalamin then changed to hydroxocobalamin. I am now having difficulties reordering the latter and wondered if anyone new where I could get methylecobalamin or the sterile saline soution when ordering from oxford sciences. I am pleased with this site as i no longer feel so isolated even though this is my first contact.

[wedgewood]

It’s quite easy to get supplies of Hydroxocobalamin from reliable German online pharmacies . I will send you information From the same online pharmacies you can obtain ampules of saline to add to the Methylcobalamin powder from Oxford Sciences . ( I personally don’t advise doing this , because of the possibility of contamination , but it’s up to you ) bodfeld-apotheke.de and versandapo.de

The Reference no for these items is 02737756 for 20 x 10ml and 02757779

for 10 x 10ml ampoules .

Saline is also available in U.K. from exchangesupplies.org. These ampoules are very small though - 2ml only.

Methylcobalamin single use ampoules are obtainable from Arnika pharmacy in Munich . You need to email them [e-mail]. to obtain these ampoules or phone them [phone]

[safluy in reply to wedgewood]

thank you wedgewood, I will give it a try. I had already order the oxford science B12 but became concerned about contamination so will take your advice. Thanks again

[Brokenbutbeautiful]

I can’t help you with supply issues, but I can tell you that this is one of the two BEST places to find support, or even to offer support! I’m sure I can speak for the other members when I say welcome!!

[safluy in reply to Brokenbutbeautiful]

thank you so much

[Cherylclaire Forum Support]

Echoing Brokenbutbeautiful 's comments.This forum helped me at a time when I had no idea of what to expect next. There was always someone here to help. Responses were quick to appear and links were useful and informative.

Kindness. That's what I recall most.

[safluy in reply to Cherylclaire]

Kindness is what i am experiencing- thank you

[EiCa]

I am not sure how much sterile saline you need. It is important to prevent contamination. I recently ordered small 5 ml. of sterile saline for nebulizing. I switched from methylcobalamin to hydroxy and was able to get it from PanPharma in Germany. I am in the US. I would not mix my own B12 solution unless there was no other option.

[helvella in reply to EiCa]

I suspect that sterile saline for nebulizing is made to a slightly different standard to what we in the UK call "Water for Injections". The difference might be insignificant, or only in the packaging, but I would be very reluctant to use it for injection.

[EiCa]

Sterile saline is a very specific solution of distilled water and salt. Seems like the definition would be standard. However, handling/prep/storage can compromise sterility which is why I buy it.

[Sleepybunny]

Hi,

I've assumed you're in UK.

Some links about PA and B12 deficiency that might be useful.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

With a PA diagnosis, worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PAS website has lots of useful leaflets/articles about PA and a page for health professionals that your GP may find useful.

pernicious-anaemia-society....

pernicious-anaemia-society....

UK B12 documents

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)

b-s-h.org.uk/guidelines/gui...

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.

nice.org.uk/guidance/indeve...

UK local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Two useful B12 books

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

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

BNF treatment info (UK) is out of date in above book. See BNF hydroxocobalamin link.

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

Very comprehensive with lots of case studies.

Films about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

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

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

I am not medically trained.

I have written other more detailed replies which may be worth searching for.

Keep asking questions and I'm sure someone will try to help.