Pernicious Anaemia.

[Jwindsor]

What b12 do i need. To start injecting.i have pericious anemia but only given the 12wk injection. Im flagging at 6wks.do i buy needles seperately. Or can i buy all together.any advice appreciated.thanks.

[Gambit62 Administrator]

Have you tried using sublinguals - sprays or tabs, or nasal sprays - for some people these can be very affective ways of keeping their levels where they need to be so it may be that you don't need to resort to self-injection.

It can also help to try different forms of B12 - cyano, hydroxo, methyl and adenosyl to see which one(s) work best for you.

Best to start using supplements just after a shot as they may be good for keeping your levels high but are not so good at raising levels if you have an absorption problem.

If you have tried and they don't work then, assuming you are UK based, the best bet is a german on-line pharmacy. Many here use amazon.de, others use goldpharma and mycare.de and sure there are others. If you are responding well to hydroxo then try to get hold of the same type as your GP is using - you may be able to see the packaging that they come in and go by that. It can be a bit difficult where you are dealing with a german site even if you are looking at the english version so if you want to post a link to what you are thinking of buying then someone should be able to confirm whether or not it is the right one.

[Jwindsor in reply to Gambit62]

Many thanks a big help to me.xx

[wedgewood]

I was in a similar position to you more than 2 years ago , and hadn’t found out about the existence of this forum . I remember the desperate feeling of being refused more regular injections. I tried sub-lingual tablets ,nose and mouth sprays and patches, to no avail whatsoever . Finding out how to obtain B12 ampoules from German online pharmacies has been life-saving . I know that sounds dramatic , but it was indeed a dramatic event for me , that put me back in the ‘land of the living ‘ ! I use versandapo .de a very reliable German online pharmacy ,and get onto their English site . Needles , syringes, swabs and sharp box from Medisave in UK . An injection now costs me £1.00 ,if I buy everything in bulk ( 100 of everything at a time) it is the most efficient and cheapest way to get enough B12 . I use the Hydroxocobalamin form of B12 , which is what the NHS uses . You can get Cynocobalamin B12 from the German sites , but that has been superceded by the Hydroxocobalamin .. So if you order , look at the fine print on the boxes before you order . Also remember to either eat plenty of folate-containing green leafy vegetables or take a folic acid tablet supplement . B12 and B9 (folate/folic acid ) work together .

I wish you all the best in regaining your health .and feeling part of the human race again !

[Jwindsor in reply to wedgewood]

Thankyou so much.xx

[Sleepybunny]

Hi,

I hope you manage to get the treatment you need.

Are you in UK?

Do you have any neurological symptoms eg tingling, pins and needles, tinnitus, memory problems, balance issues, tremors plus others?

B12 Deficiency Symptoms lists

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In UK, people who are symptomatic for B12 deficiency with neuro symptoms are supposed to have a B12 loading jab every other day for as long as symptoms continue to get better (which could mean loading doses for weeks even months) then a jab every 2 months.

If they don't have neuro symptoms then standard treatment is 6 loading jabs over 2 weeks then a jab every 3 months.

Details of UK B12 treatment can be found in

1) BSH Cobalamin and Folate Guidelines, treatment info a quarter through guidelines

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

2) BNF British National Formulary Chapter 9 Section 1.2

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

cks.nice.org.uk/anaemia-b12...

Link about writing letters to doctors about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms

PAS (Pernicious Anaemia Society)

Are you a member of PAS? In some cases they can intervene on behalf of PAS members by writing letters. At very least they can pass on useful info.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS members can access details of PAS support groups, there are several in UK. These local support groups can be a useful source of info on helpful doctors, people with similar experiences and how they coped etc.

pernicious-anaemia-society....

There are stories on Martyn Hooper's blog about how PAS has helped some of its members.

martynhooper.com/

I am not medically trained.

[wedgewood in reply to Sleepybunny]

Thank goodness you are not medically trained . You wouldn’t be helping so many patients with their B12 deficiency if you were .

[Jwindsor in reply to wedgewood]

Sorry...what did you mean.?

[Sleepybunny in reply to Jwindsor]

Hi,

I think wedgewood's comment was in response to my comment about being not being medically trained at bottom of my post.

I like to make it clear that I am not a doctor or other health professional.

[Jwindsor in reply to Sleepybunny]

Thankyou.lol.took it the wrong way....xx

[Jwindsor in reply to Sleepybunny]

You are very imformative and it has helped me a great deal. Thankyou so much.x

[christinezzzzzz]

I have had Pernicious anaemia now for the past 19yrs & have been receiving injections from G.P surgery of just 1 a month which I have been saying for the past 4 or 5yrs is not enough due to my symptoms worsening over that time.... balance/vision/memory problems & a few more besides, which they keep putting down to my hypothyroid issues & I know this is not the case. I have begged & begged to be treated with more injections but it falls on deaf ears, talking of deaf ears it has also affected my hearing because I know the signs are neurological. I decided last week it is time to take charge of my own health & especially after getting a copy of my last blood results when the doctor told me I am not deficient because my test says my B12 is at 727 & that my bloods are all ok. He failed to mention something which I have since discovered after researching the meanings of test results & looking into it further that my MVC is at the top end of the range at 97.8 & my MCHC is also high at 350 & MCH is above the range at 34.2 this shows my red blood cells are larger than normal & also that a deficiency of B12 & folate are the cause & my monocyte count is 0.4 where the minimum range is at 0.20. My findings are that I have (MACROCYTIC ANAEMIA) & the symptoms to this are : Dyspnea= shortness of breath, laboured breathing. Headaches. Fatigue, ALSO Ataxia= Gait & balance/co-ordination problems. Cerebellar Ataxia & sensory Ataxia which are ALL caused by B12 deficieny. I am hoping for my delivery to arrive today of Hydroxocobalamin 1mg which is what I was being injected with at the G.P surgery, & I ordered this online from Versandapo chemist in Germany, My needles, sharps bin, alcohol wipes from Medi supplies (Medi save ) a company based in Bournemouth & they arrived a few days ago. My needles came complete, attached to syringe. I bought 2ml syringe with 23G x1" needle for intramuscular injection, length of needle depends on size of person & how you intend to inject. I am looking forward to correcting my symptoms & I will be doing injections every other day with a daily intake of 5mg of folic acid & I have also been told to eat foods rich in potassium as injecting regular can reduce potassium.

[christinezzzzzz]

Yesterday I did my very first self injection, yay. feeling proud intramuscular into the Deltoid area & it was so much easier than I expected. Can I just add that I had researched & watched video's on how to inject, & also used one of the needles to practise with on a half of pomegranate & I even used a little blackcurrant juice to draw up into the needle so I could get an idea of how to remove any air bubbles. I wanted to make it realistic, lol. Injecting into the pomegranate was a good way to get a feel for the syringe plunger & how to do a slow steady flow.