Recent bmj article - patient preferences

[Dexy123]

Interesting that the recent bmj article on PA indicates that oral versus injection of b12 should be considered based on patient preference and context of deficiency .. it doesn’t seem that patient preference has been considered as much lately however!

[pitney]

Thank you for this

[Cherylclaire Forum Support]

I also wonder how likely it is that patients will discontinue treatment when they feel better.

It seems far more usual for patients to have been so ill that they remain aware of the possibility of deteriorating in the future - and would rather risk going in to the surgery during the peak of the pandemic than forgo their treatment , as we have seen in the mass of posts about this subject.

Adherence to long-term treatment for B12 deficiency is quite unlikely to prove a challenge - for sound reason. It was awful once and it could be again.

The rabbit-hole. No-one wants to go back there !

[Dexy123 in reply to Cherylclaire]

I know - I wish I was in the situation where I would happily discontinue injections! (mine currently on halt due to pandemic). I felt the wording around the oral vs. Injections and patient preference was maybe just showing clinicians being out of touch with the thoughts of patients or maybe there ARE actually people out there who find the injections a chore! If that really was the case then can see why clinicians question whether patients really needed the injections or if oral supplementation was sufficient; like you say many on this forum are not of this opinion!

[Cherylclaire Forum Support in reply to Dexy123]

I can think of one:

valsilverjames has just posted "Tablets vs injections":

given cyanocobalamin tablets as alternative to injections, loves them.

So that's one, then ....

No, that's it, I think !

I tried the Boost spray - didn't do a thing for me.

[Dexy123 in reply to Cherylclaire]

I take the boost spray daily ever since the b12 deficiency was diagnosed and i find it helps take the edge off feeling drained and weak. When my loading injections finished recently my gp suggested that my injections stop and I try taking just the oral spray because my b12 levels are now normal even if I’ve still got neuropathy symptoms. I find the oral is not a substitute and I imagine if it was then I probably wouldn’t visit this forum for help and advice! Pleased for anyone who finds the oral dosing does help without injections

[Cherylclaire Forum Support in reply to Dexy123]

I should imagine if the spray was as effective, then none of us would be either getting injections or self-injecting at all. But we are, so it isn't.

I don't know why GPs test for B12 after injecting you with it. They are measuring the amount of their own treatment in your serum (but not it's effectivity at cell level).

Your GP is misguided if s/he believes that neuropathy symptoms can best be treated by oral spray. The treatment for those with neurological symptoms is to continue loading injections every other day until no more improvement can be had - which is what my GP was doing for me, after checking my MMA. I could only manage to get 2 injections a week because of availability of nurses, but a lot more than most seem to get.

A referral to a neurologist is needed too - but there will be quite a wait I should think.

You need to be treated to prevent any possibility of permanent damage from demyelination of the spine (which a neurologist can detect). The myelin sheath can heal and repair if the problem is addressed early enough.

How is your balance ? Your walking ?

Nerve repair can take a long time. Oral spray is not seen to be effective in these cases.

My GP has never checked my serum B12 since twice getting readings of over 2000ng/L in 2017 - as there was no point and she was satisfied with it .

Folate, ferritin, vitaminD and thyroid she checks regularly because the first two were low, supplemented for 3 months, then low again - difficult to get up to a helpful level and stay there. Took a couple of years to get them to stop dropping. Vitamin D because I was found to have osteoporosis of the spine - and thyroid because it can struggle when everything else has gone wonky !

[Dexy123 in reply to Cherylclaire]

Fortunately I’m fine with walking, balance etc and the symptoms I get aren’t obvious to other people so I think the gp thinks that’s I’m imagining it, especially as I completed the strength tests even if I felt clumsy and weak at the time. She also seemed to think the cause is dietary, to which I know it isn’t because I’m not vegan or vegetarian and know that’s I definitely have a healthy diet full of meat, vegetables, fruit and dairy products. I hoped that when I spoke to a haematologist a few weeks later that I would get a different opinion but she said that my gp could measure my serum b12 levels after 6 months to determine if it really was dietary or not. This is the same haematology dept that omitted to mention to me that my b12 was less than 111ng/l several years ago and also last April when I was finally told about the deficiency.

I think because my loading injections finished just before the pandemic struck my injections stopped despite me visiting the gp to say that I was struggling since the 1 monthly injections finished. I argued that oral supplements were not enough and so I’m apparently now on a “list of people whose injections will resume after lockdown” with no promise of when that will be.

I plan to write a letter to my gp to raise my concerns over the treatment plan hence collecting facts from the recent literature but given that both doctors that I’ve discussed the issue with seem to be of similar minds re. Serum b12 and lack of need for regular injections I’m short on confidence of a useful outcome and figure that I need to make sure my arguments are compelling.

Your gp sounds much better and has followed up with a good repertoire of tests. I’ve had folate, coeliac and thyroid tests, all of which came back normal. My iron is hard to maintain but as I’m taking anticoagulants it’s hard to argue that this isn’t the cause of iron issues.

[Stransky in reply to Dexy123]

Hi Dexy123 here is the link I just received from my CCG, I went directly to them as I was told by my surgery my injections had been cancelled for six months.

b-s-h.org.uk/media/18275/bs...

As you can see it recommends to GP's to miss one injection contrary to what was inn my letter. You know how you feel, maybe you'll have to play hard ball, it isn't a cost issue, I've had that discussion, it is due to a lack of knowledge among the health fraternity, this is just highlighting a long running problem.

Take control do the SI it is the best thing I did and would not be coping with this s@@t right now if I didn't.

[Hidden]

The very last sentence is important. If there are neurological problems then this whole approach is dead in the water. It will be interesting to see how quickly neurological symptoms are dismissed as irrelevant. I will stick to me self injection as they do work.

I haven’t looked at the cost of high dose oral cobalamin tablets but I would suspect 84 of them would be considerably more than the fifty pence or so of the actual cost of an ampoule for injection.

Three servings of minced raw liver daily was also an effective treatment so that could be argued as being a suitable dietary solution. Expensive though to the sufferer.

[Dexy123 in reply to Hidden]

You are right - the cost of supplementing with oral b12 is more than an ampoule and so I told my gp that the annual cost of funding my own oral supplements would mount up and that it seemed silly if I wasn’t absorbing it anyway. I can afford it but I can see the cost of self-injection is more economical and more effective treatment. Presumably the cost of nursing appointments is really the cost which the NHS are trying to cut back on.

[Stransky]

I have just had a long conversation to one of the authors of new guidance for GP's administering regular meds, this was after me emailing my local CCG (Dudley W.Mids) very nice guy explained his rationale behind the guidance but didn't seem to understand the real issue as he had taken advice from haematology that I would have enough B12 (stored up) to last 12 months or more, here is the link they sent me earlier, referring to the recommendations you post here. Below is the guidance to GP's in Dudley.

dudleyformulary.nhs.uk/down...

I did ask if he had spoken to PAS, answer no, suggested it would be a good source of info regarding B12 deficiency, but he said that B12 was just one of the items dealt with in the guidance, in an effort to reduce contact between patients and NHS staff for obvious reasons. I have to thank Jag Sanha for making the effort to contact me personally but still feeling let down by my CCG.

[Dexy123 in reply to Stransky]

That’s very interesting and explains the situation I find myself in and probably many others. Disappointing but it’s helpful to know where the guidelines stand.

[Hidden in reply to Stransky]

Most interesting Stransky. It is good that they include the caution of treating when symptomatic however it is fairly obvious that the casual reference to liver stores and being able to extend beyond 12 weeks is proposed by someone who is not aware that after injections the level in blood test will be at that maximum anyway. It has been drawn up by someone who has heard about the condition but never actually suffered it: no-one with PA or any other B12 deficiency condition would dream of suggesting missing an injection as we all know that most of of need it well before. Either numpties or bureaucrats.

[Cherylclaire Forum Support in reply to Hidden]

The liver stores thing originated with the BSH guidance for treatment during covid-19 - which, after consultation with PAS, was hastily revised.

Anyone with pernicious anaemia cannot access liver stores of B12, any more than they can access B12 from food.

Posts on here have links to this revised edition, and it can be found on PAS website.

[Hidden in reply to Cherylclaire]

Thank you. It should never have been issued like it was. You and I as well as many other know exactly what you have put here but it doesn’t necessarily follow that the individuals with the prescription pads and the pens to sign them do. I make no apologies for my sceptical attitude to GP’s but I have too much history of their shortcomings to think otherwise. Covid 19 is a very convenient umbrella to shelter under.

I am going to have to try joining PAS again: it’s website was down the last time I tried.

[Cherylclaire Forum Support in reply to Hidden]

You and I know, yes, but I always worry that others don't - so I try to explain everything, in case it also helps other readers here to make some sense of fast-moving issues (or coronavirus-led opportunism; depending on your treatment or lack of it !)

You are right- the hasty retreat from an untenable position based on erroneous information by BHS is only useful if the revision is read and adhered to.

Even if this means GPs or practice managers needing to write another letter apologising for the first- and reinstate a successful treatment given; often, for many years.

I understand the concern by practice managers that having patients come in to get an injection means a potential risk to patients and administering nurse - but people can learn to self inject at home (or partners, family members) by using a recommended video if they must. If they are worried about the safety of this option, nurses can help via Skype etc - risk-free. It certainly seems a more sensible answer.

It's not ideal, but beats stopping treatment based on a false perception.

I would keep trying with PAS - they are the ones that got this BHS guidance reviewed.

They were also into the early stages of research about why some people need more injections than others. Let's hope that continues.

[Hidden in reply to Cherylclaire]

The basic problem with this is the insistence that all injectable drugs are supplied against a doctors prescription. It makes things so much easier legally as anyone in possession of such material has bypassed the law. All it needs is for it to be available over the counter of a pharmacy as that keeps it under some control. Considering the low cost of the stuff and the injection equipment the only people who would lose out would be pensioners as they would than have to pay for it. Otherwise it would be cheaper than having to cough up £9 for a years supply.

I just cannot see the medical guard dogs relaxing their vigilance over this particular manger.

[Cherylclaire Forum Support in reply to Hidden]

And yet quite a few people here seem to have been able to get B12 syringes etc from their surgeries. I've even seen a youtube video of a GP demonstrating B12 self injection- presumably for patients.

Rules for some, rules for others, and then there's Gloucester.