Pernicious Anaemia Society
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Don't know what to do ?

A bit of health related and personal . Since my pa journey I have been troubled with anxiety . I am currently fighting more frequent injections . Have got Somewhere since Christmas as gp is now allowing me monthly . Not quite happy as yet as neurological symptoms are bothering me so fighting for every other day .! My problem is my child has a meeting in her school tomorrow . And it is also the day of my injection so would be rushing to school and to doctors straight after . Plus I am at my worse the days prior to injection . I don't want to let her down though think it is too much for me with my walking being so bad . ?

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Hi Andypandy. I can well understand the feeling that you don't want to let you daughter down...and also that dead dragging feeling that can arrive well before an injection.

It's quite difficult to know what to suggest as only you know whether you have the physical strength to do both.

A couple of suggestions...

a) is it possible to re-arrange your daughter's meeting (I hesitate to ask because no idea how important the meeting is)?

b) if you're worried about letting your daughter down because of cognitive function - well I've found that usually only I know how really bad I am - people I don't know well often can't spot when I'm not a fully functioning person 😉.

c) is there a friend or neighbour who could give you a lift so that you can pull both in? (I know it's sometimes difficult to ask for help - but people often surprise with their willingness to help - even people that are perhaps not well know)?

d) would the surgery be prepared to change your appointment time - say to last on the day's list - so that you have time to recover in between (though aware this might be a bit of a tall order)?

e) You don't mention how old your daughter is but is she of an age where you can discuss the potential difficulties of the day openly with her (aware that none of us wish to burden our children with 'adult' stuff but sometimes they just surprise us 😉).

Not sure that any of this will be of any help, but whatever you decide to do, just be kind to yourself and remember that this is not your fault...given better health you'd do both without batting an eyelid. And then some.

Good luck...hope you manage to work something out...

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Have you any B12 Boost spray or other sublinguals that can give you a temporary boost? Or anything with extra B12 in it that might help a tiny bit?

If your daughter's meeting is very important and can't be moved, simply and factually tell the people involved that unfortunately you are due some medication and are not at your best today.

If the meeting is that important, even if it means you will feel more dead tomorrow, concentrate on the meeting for today and get your jab tomorrow or later this week.

If you had gone down with something like a vomiting virus you couldn't attend and things would have to be different so imagine things from a different perspective and ask yourself what would happen then?

Good luck!

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Thank you foggyme and deniseinmilden it is a parent teacher meeting . I have rang school and waiting on a call back . In the meantime I messaged her dad and asked him to attend as I really can't make it . It's just the way it has worked out and I'm upset as I didn't get to go last year either . I feel a bit disconnected with the school the. Because of the problems this deficiency is causing . I suppose I'm still getting used to symptoms but if I don't take this app I will not be able to get app until next week and I really can't wait any longer . I think Iv made myself feel better by telling myself that I would rather go when I felt a lot better than when I am mentally and physically spent 😥

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Yes, I understand as well Andypandy30. Pleased you’ve put the self beating stick away and hope that you pick-up when you've had your injection. Take care 😉

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Foggy me thank you I got so stressed I contemplated not even going for my injection as I already felt anxious . I have a bit of a sore throat which could be throwing me off or my thyroid off. I don't know . I am trying to calm down as best I can .just worried the injection will make me more anxious so need to concentrate on the fact I need it 😧

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So sorry about the anxiety Andypandy30...anxiety can be one of the symptoms of B12 deficiency and so could be down to the fact that you're ready for an injection...which is more likely to help, than not.

Just focus on getting to the surgery...and getting that B12 into the place it's needed most...namely, you 😉.

Deep breaths...and go for it 😉

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You don't know how much your response means to me today foggyme . I am thinking it's the stress and worry of all the minor things which seem so big at the time and that my symptoms with B12 deficiency and being so ready for injection are all rolled into one . So I'm taking your advise and going for it . Thank you xx

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Think you're right Andypandy30...it’s all part of the ugly B12 package...and it's so difficult to deal with even minor stuff when feeling so very ill.

Pleased (relieved) to hear that you're going for it.

And oh how I wish that your GP would 'let' you have your injections frequently enough to keep symptoms at bay so you don't have to suffer while waiting for your next jab.

Some in that position consider self-injection to top-up between surgery jabs 😉

Good luck....onwards and upwards 👍

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Foggyme may I ask one more thing as I have taken up enough of your time today x

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Course you can...

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Thank you so much . When I got my loading doses last year the brand of b12 was one I haven't been able to get again . My next prescription and also when she switched me to 3 monthly injections was a different brand . As .. these did nothing for me and I got progressively worse and started complaining she decided to allow me 4 weekly . So still not great . This today is only my second on the new regime . Main point being as I cannot get the type that worked in loading doses . Then when I did 3 monthly regime on the different brand I think I am afraid that they are making my symptoms worse or maybe it's absolutely nothing to do with the brand and it's just that I need more frequent as in every other day or daily injections . I think I have a bit of worry re brands switching and like to stick to what works . Sorry for the ramble . I rang chemist and they said the only other ones they could give me are mercury pharma another brand I haven't tried . So don't know wether to continue with the 2nd brand or try the mercury pharma . I just want something to work .

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I also bought b12 boost spray yesterday to maybe try until I get more frequent injections x

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Hi Andypandy30 - I can completely relate with you. I have been diagnosed with b12 deficiency but do not know yet if this is caused by Pernicious Anaemia... please can I have some advice on which b12 spray to purchase and where i can get it? (I am in the UK) X

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Hi kate6777 I bought the b12 boost spray from better life . I am using this in between injections which I now get monthly . I ordered from amazon . Still waiting on my diagnosis even tho I know I am not absorbing . Let us know how you get on . There are also patches and sublingual tablets but I haven't tried those yet xx

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Think you've hit the nail on the head - it sounds like the original brand appeared to work better because you were having every other day injections. Think 'new' brand appears not to be working because you are not having frequent enough injections.

Because of your neurolgical symptoms, once the loading doses had been completed you should have remained on injections every other day until no further improvement (as per all the guidelines). This is called the neurological regime of treatment - and most GP's have never heard of it. Shocking.

For some, it takes up to two years to achieve optimal improvement...and some have to remain on this regime indefinitely in order to stay well. We also hear of people who have to inject every day in order to stay well.

Despite what some GP's think, B12 is not toxic, dangerous, addictive...and the current 'one-size-fits-all' approach to treatment is a nonsense (we're all different and different treatment regimes suit different people - though nobody really knows why).

Have you tried pointing your GP in the direction of the British National Formulary (BNF) - it contains prescribing guidelines for GP's - here's what it says about treatment when neurological symptoms are present:

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

Here's a link to the relevant page in case you want to show it to your doctor (though your GP will have a copy of the BNF - but probably hasn't read As far as this third paragraph

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

NOTE: your GP may say ah ha, but you don't have Pernicious Anaemia. Moot point. The treatment for PA is treatment for the B12 deficiency it cause. Ergo, the treatment for B12 deficiency is the same as the treatment for Pernicious Anaemia.

In short Andypandy30, sounds like you're being under-treated...a sure sign of this is that your symptoms are returning before your next injection and then being relieved (albeit maybe partially) once you've had your next jab. And, as I said above, you’ve never actually been given the correct (neurological) regime of Injections.

Back to brands...not sure that this what's making a difference in your case but some do like to stick to brands that they know. Here's what my surgery uses (and me for in between top-ups):

versandapo.de/article/detai...

(Currently out of stock due to,special,offer event)...so here's the same from another (reputable) supplier:

mycare.de/en/online-kaufen/...

Might be the brand you originally tried. However...

Think that 'the something that will work' is more frequent injections, rather than a different brand.

Hope this helps...and I feel like we've had a little chat... not usual to bump into someone who's actually about while doing a reply 🤗🤗

You take care now 😉

P.s. Just spotted your comment about B12 boost spray - works for some (Clivealive) for a boost between injections, but not for others (me 😖) - but certainly worth a try.

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Foggyme thank you for all the info I'm just back ur kindness carried me there I will read all ur info x

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Forgot to say...not sure what information you’ve collected in forum but have links to more information, if needed for last GP approach. Just let me know if required...

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Hi foggyme I have doubts she will change from what she is doing now which is 4 weekly . I want to start on si just don't know how to start x

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Hi Andypandy...see that you’ve put up another post about getting started on SI, so I'll say no more about that here 😉.

Apologies for slow reply - not always able to log on as often as I'd like, at the moment.

Good luck with the SI - keep posting as and when you need help, be good to hear how you get on.

👍

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Hi foggyme can you advise what I need ? Pm if not allowed

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Hi Andypandy30. I’m assuming that you mean everything that’s needed to self-inject B12.

So...links to take you directly to each item required:

Hydroxocobalamin 1mg in 1 ml x 100 (boxes of 10 ampoules also available)

versandapo.de/en/8614/38623...

This has been on special offer and last time I looked, it was out of stock - so here's another supplier, just in case (I've bought from both):

mycare.de/en/online-kaufen/...

Other supplies (syringes, needles, sharps disposal box, alcohol skin wipes):

medisave.co.uk/b-d-2ml-plas... (2ml syringes better than 1ml - easier to draw up B12 and easier to handle than thinner 1ml syringes)

medisave.co.uk/b-d-microlan... (Green needles for drawing up from ampoule)

medisave.co.uk/b-d-microlan... (Blue needles for injecting)

medisave.co.uk/sharpsguard-... (Sharps Bin for disposal of ampoules, needles and syringes)

medisave.co.uk/medisave-pro... (Alcohol injection swabs)

Good luck.

👍

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I so understand and am sure you have done the right thing. x

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Thank you deniseinmilden got the jab and praying I get some reprieve for my effort x

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Well done Andypandy. Hope you feel better soon xx

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I'm sorry to hear how bad things are for you at the moment.

Have you thought of self injecting. (I doubt you can get more frequent injections from your GP. I hope I'm wrong.)

Then you can have injections when you need them. Some on here do them every day, some weekly. With the help from here it is not difficult - the supplies you need to order and the injections.

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Thank you for your reply . I'm just back and it was hard but yes I am seriously thinking about it as I need my life back .i thought of trying her one last time but that will be the last . X

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The thought of it is much worse than doing it - and it's much easier than fighting with Drs!! 😁

And for me, even daily jabs are cheaper than the time and fuel and annual prescription cost of getting not enough from the NHS!

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I am ready to go this !i had an app on Friday and was going to bring all my info . She cancelled due to weather and when I phoned surgery they told me she was working from home so I told the nice receptionist to ask her to read over guidelines and stuff and get back to me and then I overheard another one stopping her typing and saying no no she won't be able to do that she will have to make another app . I got upset as I had pinned my hopes on this getting me injections moved from 4 weekly to every other day due to neurological symptoms . I got my inj wed and by yest I have severe brain fog and today the weakness is back . I am ready to take my health back how do I go about this please anyone x

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"it sounds like the original brand appeared to work better because you were having every other day injections. "

I was going to write the above too.

Sometimes it is impossible to get the GP to give the injections many people need.

Keep self injecting in mind. Have the information for supplies ready in case the GP does not give you the extra, so you don't have a long gap.

I have just started self injecting, it is easy and has been pain free.

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Hi I need to know how to start this process thank you x

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Hi!

For more information on SI, including sources of supplies you could look up my profile by double clicking on my name and scroll down to see my post "My Experiences".

If you can't get the nurse to show you how to inject into the outer top part of your thigh then there are videos on YouTube.

If you have any specific questions please ask again - I'm happy to help.

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I private messaged you x

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Chin up Andypandy. It’s a difficult road but you will learn a lot on this forum and the people are very nice and helpful.

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Hi thank you . I am just researching what I need to order. I tried to take the dog a walk this morning and got to the end of the street . Bit of an achievement but I want to do so much more . Did you see my updat on doctors Shunty123 ?

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No I didn’t. I’ll have a look now.

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