More frequent B12?

[jillc39]

After making a lot of fuss my gp went with my consultants suggestion that I have B12 every other week. So far so good, but after a year or more I find that 10 days after my B12 I am unsteady and other neuro symptoms come back - especially fatigue. Should I go back to my consultant? Its difficult to see her, but gp says they can do nothing until they hear from consultant. Does anybody else have more frequent b12 injections? Or should I start to self inject? Grateful for any comments on this.

[fbirder]

I, too, got the doc to go to fortnightly jabs. But it wasn’t enough. So I self-inject.

[Nackapan]

Worth a try. I'm on 2 weekly injections at Gps. Have had them weekly before this .

They have agreed to let me try subcutaneous b12 injections only at the surgery. Ivr not had one yet ad havd been having s rough time and dont want to change anythi b at present.

My aim is if I get on okay is to do sc at home Inbeween IM. Will see.

Hope you can get them to agree to more.

[wedgewood]

You could of course go back to your consultant , but I never has any success . with any consultant or doctor after my diagnosis of PA . I could only get the bog-standard 3monthly . Even with totally numb feet and many other symptoms . If you get nowhere here is some info which should be of help

Help for Pernicious Anaemia /B12 deficient patients and others wanting to self-inject B12 .

ALWAYS MAINTAIN ABSOLUTE HYGEINE WHEN SELF-INJECTING .

B12 ( Hydroxocobalamin) ampoules can be obtained from some German online pharmacies . These pharmacies are strictly controlled by the German Health authorities , so no cause for concern . No prescription needed in Germany for B12 ampoules ( how enlightened !) Many members of the forum obtain their B12 ampoules from these pharmacies, and they are very reliable .

bodfeld-Apotheke.de ( in German , but can be obtained in English from a drop-down list on the top right-hand corner of the site .)

versandapo.de ( in German only so you might need a translation app. Or use Google Chrome . )

These pharmacies use a courier for deliveries , and take about 4 working days .At the moment a delivery costs about €9.00 , no matter how many you order .( I order 100 at a time with a use-by date of 2 1/2 years hence . )

You can pay with a debit/credit card , PayPal or Amazonpay .

I register with the pharmacies that I use . It makes it easier when you re-order. I really think it’s a good idea to register before your first purchase .

amazon.de ( German Amazon ) available in English ) The disadvantage here is that the several pharmacies who supply B12 ampoules through amazon.de ,do not all deliver to U.K. You need to trawl through them till you find one that does .

Search for Rotexmedica vitamin B12 depot . Don’t forget “depot” because you could otherwise order Cynocobalamin accidentally, which Rotexmedica also produce . Cynocobalamin would work for you , but the NHS uses Hydroxocobalamin. Cyno is cheaper . These ampoules are 1mg x 1ml .

Hevert, another company produces 1mg x 2ml ampoules

Pascoe manufactures 1.5mg x 1ml ampoules

If you want to buy any pharmaceutical items you can use the code number ( called the PZN — It is printed on every pharmaceutical item) ) that refers to that item and it will appear on your screen .

For a packet of 10 Rotexmedica b12 depot Hydrocobalamin ampoules, and multiples thereof , use the number 03862297 . For 100 ampoules (10x10) use the number 03862305

You cannot use those numbers if ordering from Amazon.de , only if ordering directly from pharmacies.

Needles , syringes swabs and sharps disposal boxes can be obtained from medisave.co.uk Always buy 100 of every item ( no , not the disposal boxes !)

I buy long withdrawing needles 21G x 1 1/2 inches . The withdrawing process makes the needle blunt when it touches the bottom of the glass ampoule ( ouch!)

I use a 25G x 1inch needle for injecting .

Open the ampoule using a swab wrapped around it , to avoid nasty cuts . The weakest place on the ampoule is marked with a spot on the neck . If you have a problem with this , a device called an ampoule opener , about £3.00 , is obtainable from amazon.co.uk

exchangesupplies.org also supply needles and syringes .

I use a 2ml syringe , although the ampoule is 1ml . This ensures that I get every last drop of precious B12 out . I pull out the plunger on the syringe, after having broken off the top of the ampoule ( having first flicked the ampoule to get all the B12 into the bottom) I inject air SLOWLY into the ampoule .Then when the plunger is pulled out again , every last drop of B12 goes into the syringe . Now the injection needle is put onto the syringe , and all the air is expelled , until a tiny droplet of B12 appears on the tip of the needle . Now you are ready to inject into the middle outside third of your thigh, where the muscle is nearest the surface ( vastus lateralis ) Inject at an angle of 90 degrees .

If you are needle-phobic , there is help in the shape of a device called an auto-injector , costing about £100. This is available from a Danish company unionmedico.com

I don’t use one but I’ve heard good reports on them .

Also if you are needle sensitive , numbing cream can be used ( Amazon)

The above method is called Intra -Muscular . ( I.M. ) you can find videos about it on Utube Some are good , others not so .

You can also inject Sub-cutaneously ( sub-cut) A shorter needle is used . I know nothing about this method , except that it is an accepted way of injecting B12 .

If you are injecting B12 fir the first timer, you should have someone nearby , in case of anaphylactic shock . This is a very rare reaction , but I feel obliged to tell you.

Do not worry about overdosing on Vitamin 12 -You cannot . That’s a proven fact.

I have been self-injecting for 4 years now , but I do remember how. very nervous I was the first time . I was shaking like a leaf🌿! . I don’t turn a hair now .It has changed my life . Don’t be impatient .Also some people feel worse before they start to feel better .

Remember to include vitamin 9 in your daily diet ( also known as folate in food )found in green leafy vegetables , peas etc .In tablet form it’s called folic acid . A modest 400mcg tablet daily would be good .It cannot be stored for long in the body .B9 works synergistically with B 12 .

Very best wishes .

[jillc39 in reply to wedgewood]

thank you so much for taking the time to give me such a full reply. I really am most grateful for this help

[Wagonwheel]

It sounds daunting but I would take control and learn to self inject, as like wedgewood it has changed, or rather given me my life back.

Learning what frequency of injections works came down to trial and error, in the end I got fed up of waiting in my doctors surgery for a 2 min (sometimes painful) shot. I inject every 5th day, keep an eye on things and have an extra one when under stress or being extra physical. Thankfully my GP at the time who gave me a clinical diagnosis of PA, agreed and I have a repeat prescription for 15 x B12 ampoules each prescription. I also buy from versandapo.de as it works out pretty much the same cost wise. I do so as my GP left the practice and I half expect my prescription to be stopped without warning.

A wonderful person on here (there are many) posted their experience with a GP who explained to pinch the flesh on the thigh so the needle goes in all the way smoothly. I find this technique is fantastic as now I don't feel a thing; just have to release pressure on the pinch towards the end otherwise you get a mini B12 squirt back when you take the needle out!

All the best

[Cherylclaire Forum Support]

What sort of consultant have you seen, Jill ?

It was really good news that an injection every fortnight was recommended treatment - especially as this is not a "usual" frequency. This leads me to believe that the consultant would not be averse to a more frequent regime based on symptom return, rather than pointless bloods or unreliable test results.

However, I, like wedgewood , could not ultimately get anywhere with any of the consultants: neurology, haematology, gastroenterology etc. I worked with any and every frequency that was offered to me by the NHS, including a really generous re-loading 6 months of 2 injections a week, but eventually had to resort reluctantly to self injecting as no-one could find a sound medical argument for continued frequent injections.

I have been self-injecting for over 2 years now- and have recently reduced frequency from every other day to about 2 a week. This is a lot, consultants are not happy, but crucially, GP has seen me at my worst and has seen what it takes to get improvements. It has taken a long time and a lot of self-doubt but I'm getting better in a more predictable way now.

I first went to the practice at the beginning of 2015. I have had no diagnosis that stuck, but the GP believed that this was functional B12 deficiency (after loading injections for B12 deficiency finished and waiting 3 months for next injection) way back in mid-2016, and had MMA blood test - lab confirmed her diagnosis.

Nothing was found by consultants later to support this- even from DNA results. I still treated myself as if this was the case (ie frequently), since no alternative cause was found or suggested by any of my tests or my ongoing symptoms.

I was really rubbish at injections at first, mainly inept because I was too anxious and uncertain about what I was doing to relax muscles ( probably because B12 deficient).

Now I don't worry and it doesn't bother me. I'm glad that I have this amount of control over my life and needs, which aren't the same every day. If I need more, I need more; it's not a major regressive step . Experimenting with less (1 injection a week) has been a bit of a mistake, but at least it's been my mistake and easily rectified by me.

I still keep logging symptoms records, just in case one day there might be a change in medical opinion. Current PAS research is looking most hopeful, but perhaps this will only apply to those with PA diagnosis (?)

Some days, it just helps to look back at how bad I once was.

Whether you decide to put your case to the consultant and/or self inject, I wish you well and hope to hear some good news from you in the near future. Best of luck, Jill .