Pernicious Anaemia Society
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Alternative Treatment

I was just wondering how many people have had experiences with treatment other than injections. My doctor’s referred me to a rheumatologist but if the wait is as long as I think it will be, I don’t want to suffer until then.

Can anyone recommend anything, like b12 patches or nasal spray, that I can use in the meantime? I’m trying to find something to save me from injecting myself without the doctor knowing.

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Hi heather_turner

Unless you've had your B12 levels checked, which show you to be reasonably low, even within the range, I suggest you don't take anything re B12 as, if you then have blood tests, your results will probably be skewed.

If you've had blood tests done that show you to be B12 deficient, and you've got appropriate symptoms, then maybe you could start self-injecting. Also, be sure your Folate is well within normal limits as lack of Folate can also cause similar symptoms

I started self-injecting, as my GP wouldn't prescribe, in spite of bloods indicating I was deficient and Folate was at the top of the range, but I didn't tell him until I had seen significant changes that could only be due to having B12 replacement. He accepts I seem better (healthier), I certainly do feel so much better, but he still maintains he can't prescribe B12!

Having said that, even if GP did prescribe B12, I would only get injection every 2 or 3 months, whereas I currently have injection every 3 weeks. So, being in control has definite advantages. Also, I don't have to worry about GP withdrawing the prescription at any time, as seems to happen quite often!!!

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I had my b12 tested almost a year ago and it was very low. I had the initial 6 booster injections and now go for them every 3 months, but they’re reluctant to give me them any more frequently than that and said that if the injections weren’t working I probably had another problem.

I’ll see what the rheumatologist has to say, just in case their is another problem, but I don’t want to be diagnosed with one of those umbrella terms for “you’re in pain and we don’t know why” if it could simply be solved with more b12.

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I had low B12 ( tested negative for P.A) and my dr wouldn't treat it. I self injected and the most obvious B12 def symptoms diminished or disappeared ( tinnitus, hand tremor, numbness / pins and needles, drastic air hunger ) However the chronic fatigue stayed. GP had referred me to a respiratory clinic as he wouldn't accept the air hunger was linked to low B12. Respiratory dr did very extensive bloods , found nothing amiss and referred me to a rheumatologist. Saw 2 ( one privately, one NHS) who both diagnosed Fibromylagia.

I'm not badly affected and can control the moderate pain I have with OTC medication. The fatigue is harder to control but I'm getting better at pacing and dealing with it.

I still s.i about every 6 weeks, and take a host of vitamins and minerals which, in my opinion, help me far more than the heavy duty meds a GP would prescribe. Best thing I've done recently is cut out all carbohydrates and take a probiotic daily, helped immensely with improving IBS.

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Heather

A rheumatologist is NOT going to help and it is a waste of your time (and his). B12 is a biochemical thatis unique and needed at a very fundamental level by your body (energy ptoduction). There is no substitute. I think that your doctor is playing "pass the parcel" while your health deteriorates.

With respect to Alternative non-orthodox medicine I can speak with some authority (BSc Herbal Medicine). There is NOTHING in the Herbal-Medicine pharmacopia that can help. You have enough B12 or you do not. There is no alternative or way around it. You must find a way to get sufficient B12 or you will eventually be permanently damaged. There are only five options that I know of:

1 Battle with the medical profession until you get sufficient.

2 Purchase sub-lingual B12 lozenges

3 Purchase the highest level B12 transdermal patches that you can get your hands on.

4 Purchase B12 nasal sprays.

5 Self inject Hydroxocobolomin or Methylcobolomin

No1 depends on luck (if you have an unusually enlightened GP). It seems like you are not one of the fortunate ones. Sending you to a rheumatologist is just giving you the old medical run-around. GP's tend to do this when they dont know what to do. it postpones the day when they must decide to breach NICE guidlines or let you deteriorate.

No.2 is a slow job. Getting enough into your system if you are already depleted is going to be a long slow job.

No.3 in my experience is similar to No.2

No.4 I have no experience of. I am given to understand from others that have tried them that they are similar to No.2

No.5 is most effective and will do the job - but some people have aversion problems with injections - and that goes double for self-injections.

If you take over managing your B12 levels as JMN2017 points out you will skew any test results. You may need to inform your doctor that as the treatment available on the NHS is symptomatically inadequate you may need to resort to self-medication. This tends to have an electric effect. (My wiife's doctor upped her B12 injections to every 6 weeks). If you go down this route you will need to be able to make a technical argument. The necessary material is on this site elsewhere including the letter that I drafted for my wife to send to her GP together with the research paper that backed it up.

The sixth option is the do-nothing option. This ends in a very bad place. Those are the options with pros and cons that I know about. If there are others - I am sure soemone else on this site will fill in the blanks. Best of luck.

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I could not have read this at a better time. Last night I ended up in hospital, I was fighting for air and scared. The doctors were perplexed, my blood was fine (which it will be, because I have injections). I can’t continue living like this, I’m going to get some patches, and if I can’t see any improvement I’m going to start self injecting.

In my opinion, at least if I go to the rheumatologist and nothing else is wrong, they’ll have no choice but to up my injections. There’s just that fear that I’ll get stuck with a vague diagnosis of muscle fatigue and they’ll just give me some strong pain killers with a horrible sedative effect, which I don’t want because I feel sedated most the time anyway!

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heather_turner

I totally agree with Johnathan and he's put it very well. I decided to self-inject rather than wait around until a medic diagnosed and treated because I didn't want to end up with permanent neurological damage. I suspect some of my symptoms are permanent now as I think I've been deficient for a lot longer than I initially thought.

At the end of the day, it's your body and you have the right to make decisions. B12/Hydrocobolamin etc is not toxic so there's no problems there.

I wish you luck. I appreciate it's a difficult decision.

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This is the thing that I can’t get my head around, a lot of people (me included) have serious neurological problems because of their untreated condition, not to mention the constant aching and fatigue. How can any doctor say that there’s no problem, just based on blood tests, when clearly all the symptoms are still there and will only get worse? I understand they’re not always very educated about the condition, so why don’t they research it? Why should their lack of knowledge have to affect another persons life? I’m so wound up.

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I am a doctor (paediatrician) and I have PA. The lack of knowledge about this condition in my profession is glaring. Most find it a simple matter of replenishing the stock of vitamin B12. Complaints like fatigue, shortness of breath, weakness are unfortunately considered subjective and are not taken seriously ... Do not waste your time with rheumatologists (I lost a year of treatment with them, which aggravated my peripheral neuropathy).

I treat myself (one shot of hydroxicobalamin every other day since last June) and try to get as much reliable information as possible. Stay informed on a forum like this in which people understand what you are feeling and can really help you. Good luck!

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I was thinking about self injection, but the idea scares me a little. Could you give me any advice? Where to get it, how you know what you’re buying etc. I have nurses in my family so it’s not the actual injecting that scares me, I just don’t know where to start with it!

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Please do not be afraid, it 's no big deal. I bought it on a German website and a friend posted it for me (I live in Brazil). It should be easier for you if you live in England since they can deliver it at your house. You can inject subcutaneous or intramuscular, the latter hurts a little more, but acts faster. With a family nurse to help you, it will be even easier!

Bellow is the link where I booght my B12:

versandapo.de/8614/3862297/...

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Thank you very much :)

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heather, whilst I agree that it is unlikely that a rheumatologist will find anything useful it is very easy to be fixated that B12 is the only thing going on when, given that the most likely problem is PA which is an auto-immune condition and auto-immune conditions tend to come along in clusters, there is also some merit of being open to the possibility that there is more than one thing going on.

The problem with the treatment of B12 is in some respects part of a much wider issue around doctors thinking that test results tell the whole picture and are more accurate measures than actually talking to their patients. B12 also suffers from the added complication that it has become associated with the term Pernicious Anaemia so many are very confused about how B12 deficiency works and often think that it is all the result of a particular type of anaemia - whereas the biochemistry is much more complicated and potentially gets much more complicated once treatment with B12 shots is started. Serum B12 can be a useful test for demonstrating an absorption problem but there is a lot more to B12 deficiency at the cell level than being able to absorb it from your food.

In terms of effectiveness of delivery methods - studies tend to show that just over 1% of sublingual B12 gets into your blood stream - it's just under 1% for oral tablets ... and around 3% for nasal sprays - I'm not aware of any studies around patches. 100% of a B12 shot gets into your blood stream.

Tablets and sprays will be most effective in terms of treatment if they are started just after a shot as they are not going to be effective in raising levels but can help with maintaining levels. On the downside they don't work for everyone. On the upside they do allow you to try different types of B12 more easily and mix and match.

I personally find nasal sprays quite effective and use a mixture of hydroxo and methyl with adenosyl sublinguals and a mix of hydroxo/cyano injections (depending on what I order when I order injections)

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heather_turner

Medisave is a good, reliable site for needles and syringes. I'd suggest choosing from these. There is a delivery charge but I can't remember how much.

2ml syringes

£4.67 / 100 (incls VAT)

medisave.co.uk/b-d-2ml-plas...

or

£2.75 / 100 (incls Vat)

medisave.co.uk/bd-emerald-h...

Green needles - for drawing up fluid / IM injection

£2.82 / 100 (incls Vat)

medisave.co.uk/terumo-agani...

Blue needles - IM injection

£2.82 / 100 (incls Vat)

medisave.co.uk/terumo-agani...

Orange needles - S/C Injection

£2.82 / 100 (incls Vat)

medisave.co.uk/terumo-agani...

Here is the site cquadros suggested, in English ;) It's a reputable place to get Vit B12. Don't forget to add on Delivery charges (again, can't remember how much)

versandapo.de/article/searc...

Obviously, the larger quantity you buy, the cheaper each ampoule is.

Hope this is helpful

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Very helpful, thank you! :)

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My order, from versandapo.de, and cost about 3 months ago. Not sure I'm allowed to post this.

PZNItemPriceQuantityTotal

3862305VITAMIN B12 Depot Rotexmedica Injektionslösung

Injection solution, 100X1 ml €53.34

Forwarding charges (Great Britain) €9.00

Value of your order EUR :62.34 €

In the value of the order are EUR 10.39 VAT contained.

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