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Pernicious Anaemia Society
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Hi, I was diagnosed with PA almost 8 years ago. My doctor was really good to start with. She started me on folate for a week while they waited for my final results. When they came back and it was obvious I had PA my trinsic factor was less than 1. I was started on 1 b12 injection a week for a month then 1 a month for 3 months then every 12 weeks. It was some kind of miracle. I had the energy again I needed to look after my 4 young children and be actively living my life. After a while maybe a year or so I felt the symptoms coming back I begged for my injection to be increased eventually they agreed and again I was living a near full life again. Out of no where they decreased them again I became so ill almost immediately, awful mouth ulcers, extreme tired ness, hair falling out, pins and needles, brain fog. Thankful they increased them again right away. I had to changed doctors but thankfully they were great and continued with the injections every 8 weeks. About 18 months ago I began getting symptoms again I asked for injection to be increased to every 6 weeks. They did for a short period but then after 6 months reduced back to 8 weeks as blood test came back at b12 levels being 1200 which according to the doctor was too high. But I can’t cope with only getting them every 8 weeks I’m so tired all the time. Just before my last injection I fell on top of my glass coffee table because I’d lost all feeling in my leg. I got my injection 4 days ago and I don’t feel any better. I’m considering si but Iv no idea where to order them from. I live in Northern Ireland. Any advice would much appreciated. Thank you .

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Yours is a story we hear so often here. Your story has amany elements that are the same as mine . It’s truly outrageous . I eventually had to self - inject You can too . Daunting when you first think about it , but after 2 1/2 years , it’s honestly a doddle .! First of all , you CANNOT overdose on B12 . So no worries there . First , order B12 ampoules from an ecceellent , reliable, state controlled German online pharmacy. I use

“versandapo.de in English “

Yes type that in and you get straight through to the site in English . If you accidentally get it in German scroll ( down I think ) find the Union Jack 🇬🇧 and click on it . Then search for Hydroxocobalamin . A drop down list appears . Click on Hydroxocobalamin acetat . Then the choice appears—- I use 1mg x1ml ampoules , but you can get 1mg x 2ml ones. I like injecting less liquid . I buy 100 at a time -€55 .00 I think —- Plus €9.00 courier . You can buy 10 and multiples thereof . Courier costs the same no matter how many you buy . The name is Rotexmedica for the 1mg x 1ml ampoules .and Hevert for the 1mg x 2ml .. You need to register before your first purchase . You can use a card or Paypal . Takes about 4 working days .

Everything else from medisave.uk

I use Terumo AGANI needles For withdrawing—- 23 gauge x 1 1/2 inches long . And for injecting into thigh ——25 gauge x 1inch 100 of each

100 x2 ml syringe

100 Swabs , and 1 sharps box are also needed. ( full box can be taken to chemist for disposal. )

Look at plenty of videos of I.M. injections - some are good others not so .

I would start with loading doses ( 6 over 2weeks ) then as required to keep you symptom free .Don’t forget its important get your folic acid(B9) which works with B12 . 400 ug are fine (Amazon )

Well that’s it I think . Get cracking and symptom free . It’s shocking that we have to do this . But until the doctors do some learning there is no way round it . Best wishes .

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Thank you so much I’m definitely going to so I just wanted to make sure I was getting the right stuff. I just find our doctors are not informed enough on this condition .

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Wedgewood's advice, as always is excellent.

As you have already been having the jabs you might find just doing them when you need them is effective.

As lots of other things are needed to make the extra B12 work properly you may benefit from a broad spectrum multivitamin and mineral supplement, plus extra folate, potassium, magnesium and iron, ideally from your diet.

If you Google these you can see what the symptoms of deficiency and excess are and what sources you will like.

Good luck with everything!

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Really good advice deniseinmilden , because P.A. patients have low /no stomach acid , so cannot absorb other vitamins and minerals efficiently

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Can I just take these orally or should I get a patch or some other form. Thank you for all your advice I finally like maybe I might finally get on top of this.

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Iv just taken the plunge and ordered needles, syringes etc... now to order ampoules. I actually feel really excited that I can take matters into my own hands now. Thank you all so much for giving me the advice and courage.

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Also I was wondering if you had any advise re: B12d on line, I think they are an Australian company. I don’t know how I came across it. They deliver to the uk but their Hydroxocobalamin is 10,000mcg in 2ml solutions. Does that seem a bit high .

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Did u get my pm Meisor x

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I did Iv just replied

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Yes , that is a high dose . It is 10 milligrams . The usual injection is 1 milligram . I get my Hydroxocobalamin in a 1mg X 1 ml ampoule . From

versandapo.de in English .

Search for Hydroxocobalamin.

A drop-down list appears . Click on

Hydroxocobalamin acetat

The choices appear. I use Rotexmedica . 100 ampoules cost €52,90 shelf life at least 2 1/2 years , but out of stock at the moment . 10 cost €7,99 courier cost €9, 00 no matter how many you buy .

Hevert also have Hydroxocobalamin ampoules 1mg x 2ml

There are also 1.5mg x 1ml by Pascoe .

I have not heard of anyone having an injection of 10 mg in one ampoule .

Best of luck

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I thought that. Iv been emailing the German company you recommended they have been very good so I’m definitely just going to go with them. I registered with them earlier today and I’ll order the 10pack as they are currently out of the larger pack. Thank you Wedgewood.

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Hi Meisor

I have just started self injecting. I followed wedgewood 's list of suppliers and supplies and it has all worked out fine.

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Thank you so much I feel more confident now in knowing that I can and should si.

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Hi Meisor you cannot overdose on B12 as any excess is excreted via your urine.

Click on the link below and read the article headed "Treatment with high dose vitamin B12 shown to be safe for more than 50 years"

stichtingb12tekort.nl/our-e...

During all these years have you had your Folate level monitored as this is essential to process the B12?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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No I haven’t had my folate tested not since my first diagnosis. It’s crazy how a simple little thing can cause such upset and treatment cost such a minimal amount. Our doctors need to be more informed. This was really examined in the 60s but over the years has been forgotten. Thank you so much

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Do you know anything about getting B12 from this pharmacy in the US? Thanks!

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Google “mycare.de in English “

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This pharmacy (versandapo.de ) does not ship to USA . But “mycare.de “, also a very good German online pharmacy, does . The only drawback is that they charge much more for shipping . This makes an ampoule cost about $1.50 , which isn’t too terrible I think .Someone from USA on our site has purchased Hydroxocobalamin B12 from mycare.de , and it all went smoothly

I Emailed mycare to find this out .

( The PA Society is based in U.K as I suppose you have now realised , but we seem to be attracting more people from USA! )

You can obtain Cynocobalamin B12 also from them , which is used in USA. Hydroxocobalamin is supposed to stay longer in the system , and that is what is used in U.K. So if you order from them , make sure that you get the one you want

You are able to purchase needles, syringes in USA Don’t forget you need folic acid to work with B12.

B12 deficiency can cause problems with any nerves in the body . That’s why there are so many different symptoms . The myelin sheath which surrounds the nerves is depleted by the lack of B12 . But it affects everyone differently .

Very best wishes .

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Should I just take oral folic acid? Thank you so much for your help. Until I found this forum I felt totally isolated.

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Yes take folic acid orally . . . Folic acid is very much easier to absorb . B12 is the most difficult vitamin to absorb even if you don’t have PA . it needs strong stomach acid and the presence of Intrinsic Factor . Not so Folic acid (vitamin B 9)

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I use mycare.de in Germany for NB12 and medisave.uk for everything else that I need, have had good delivery service from both, hope you start to feel better soon

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So just want to thank you all for you help and advice. I took my first si two days ago. The day after I didn’t feel any different but today I did. I felt almost human again. I fog has lifted, my mood has lifted I’m in less pain, pins and needles are almost gone, I can actually sit for more than 30 min without my legs going numb my feet aren’t freezing anymore, I can think clearly. I made my children dinner tonight, a whole meal from scratch all fresh ingredients. I cleaned the kitchen and enjoyed doing it. I went shopping and didn’t get anxious, I drove for miles just to get a new quilt because I could. My youngest was being an abnoxious teenager and it really didn’t bother me, I spoke with her calmly. These are all little things but they make my life so much easier. So from the bottom of my heart thank you all so much.

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