P.A. advice please

[linda1946]

I am hoping for reassurance. Several members of my family have P.A. My husband and three of my daughters and two grand-daughters. There is lots of other stuff going on- 2 daughters with Ehlers- Danlos one with M.S. a grand-daughter with Graves disease just as a starter. My 33 year old daughter has EDS, PA fibromyalgia, the PA was diagnosed by a gastro-enterologist approx 2 years ago who put her on monthly injections after the loading dose. About 6 weeks ago after a GP consultation( her GP is normally fabulous incidentally) it was decided to change her to a different 3 monthly injection - sounded like a good idea. However she is now in an awful state with all the PA symptoms so we managed to get blood tests done yesterday, should be back Tuesday, and if they are down, and I am hoping that will be the case, they will give another injection. Does this scenario sound familiar? She is getting married on Thursday but she is so unwell, have you any suggestions please. I know this is turning into something of an essay, but I would like to know why some have monthly and some 3 monthly injections. My husband has a recent diagnosis, but I strongly suspect has had it for years, he is on 3 monthly injections but struggling after about 8 weeks, any information would be brilliant. I, thank goodness am pretty fit but about at the end of my tether with all my crocks!!

[Foggyme Administrator]

Hello Linda 1946. I'm really sorry that you're having so many troubles at the moment.

Please excuse me...I've done several responses today and am clean out of energy so.. If you don't mind...I'll just focus on your daughter's issue (which may also be relevant to your husband also) for now.

Do you know why your GP changed to the three monthly regime? It sounds to me as if they've taken something that isn't 'broke' and fixed it until it is!!

Do you recall if your daughter had neurological symptoms when she was first diagnosed? If she did, the regime should have been injections every other day until no further improvement and the EVERY TWO MONTHS thereafter (I.e. what she was getting). Not all GP's know this. This is stated clearly in the BNF (British National Fomulary - the doctors' prescribing bible) which your GP will have a copy of.

All guidelines state that GP's should treat the B12 deficiency SYMPTOMS (not blood results). If your daughter's symptoms have re-emerged, then this is because she is not getting enough B12 to keep her symptom free. The same applies to your husband: they both need MORE B12.

You say that your GP is normally fabulous: is he aware that your daughter is having problems with the new regime?

It might be worth making an urgent appointment to see him, take your daughter and ask to be put back on the original regime, which was working for her. If he's a reasonable chap, he'll agree, especially if you tell him about the wedding and explain how worried you are that the whole thing will be spoilt if she is not fit enough to enjoy it.

If you can't get an appointment with your GP, you could try your practice nurse (if you have one). She may agree to give an extra shot until you can address the problem with your GP (especially with the wedding coming up).

It's worth noting here that you cannot overdose on B12: in Europe injections can be bought over the counter and sufferers can buy and inject whenever they need to.

In short, you will not be asking for anything extraordinary: just something simple and cheap which will enable you daughter to be and keep well.

If you take a look at some of today's other posts, I've given longer explanations about B12, which may help. Also, if you click on my username it will take you to my profile page. The first post I made, at the very bottom of the page, contains lots of wonderful information and guidelines that have been passed on to me (I'm new here). Look for NICE guidelines, BNF and NEQAS guidelines - and there are others but I can't find them in my head at the moment. You could print out anything relevant and take it to the surgery with you.

Finally, I think it's a nonsense to change a B12 regime and leave someone with something that's not working, for them. Hopefully your GP will see this and let you revert to what was working. If not, you may have a bit of a battle on your hands.

Also - any information you glean here will benefit your husband since it sounds like he also need more frequent injections.

I can very well understand the feeling of being at the end of your tether with 'all [your] crocks'. Well, they're very lucky to have you. And hopefully, you'll return here if you need additional support.

I sincerely hope that you get what you need from your GP and wish you, your daughter, and the proud father a most splendid wedding day.

Sorry I haven't time for more...please post again if you need more ideas. (Something that springs to mind belatedly - some suffer's get extra relief from B12 spray (Holland and Barret), B12 patches (Amazon), and B12 sublingual tablets / nuggets, in the form of Methylcobalamin 5000mcg, again from Amazon, though these don't work for everyone. Might be worth a try in an emergency.

[Sleepybunny]

Hi,

Have you talked to PAS? Lifetime membership costs £20.

pernicious-anaemia-society.... 01656 769 717

martynhooper.com/

b12deficiency.info/

B12 books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Could It Be b12 by Sally Pacholok and JJ. Stuart

I have written some very detailed replies in past but too exhausted now. If you search for my old posts there may be something useful on those.

One thing I would add is that I always without exception get copies of all my blood tests eg ferritin, folate , b12 , full blood count etc. I learnt from experience that what I was told was "normal" over the phone or even face to face was not always "normal" when I got paper copies.

[Gambit62 Administrator]

Was there a change from treating with cyanocobalamin to treating with hydroxocobalamin - though generally hydoroxo is used in the UK there are instances where cyano has been used.

There is no scientific evidence that I have ever come across that supports 3 months as a treatment regime and I personally haven't come across anyone who actually thrives on that regime - though there probably are some.

The nearest anyone has come up with as an explanation is a study done in 1960s that showed that on average people retain hydroxo twice as long as cyano - though the study was also quite clear that there were significant numbers of people for whom the opposite was true so it couldn't be taken as a rule of thumb that 2 months would work for hydroxo if one month worked for cyano. For reasons unknown - though possibly related to cutting costs - it was reduced to 3 monthly if there was no neurological involvement at some point in the 1980s.

Once supplementation has started levels in blood should never be used as a basis for determining treatment. The serum B12 test just tells you how much B12 is in the blood - it doesn't tell you anything about how much of the active forms of B12 used at the cell level are there and it tells you even less about what is happening at the cell level - which is where B12 deficiency does its damage. The test results are only significant if they show that levels are low.

There is a condition called functional B12 deficiency - where it is quite possible to have high levels in blood but none of it gets through to cells because the body has an auto-immune response to high levels in serum, and produces a protein that binds to the B12 keeping it in the blood - this doesn't affect everyone - but one study in Denmark implied that it could affect as much as 40% of the population. There is a lot of variation in the levels in serum that kick off the response and it may be one reason why some people need a lot more B12 than others, as the most appropriate way of treating it seems to be to keep B12 levels really high so that there is more B12 in blood than the body can create protein to bind.