PeeGee

[petergormley]

I am new here and would like some Info if possible I have P A and get injections every 12 weeks which does not seem often enough as I am completely washed out after 8 weeks and for 2 weeks after I get injection I am a very active person of a certain age and get tired very often My Dr and Nurse refuse to inject any sooner I am thinking of trying B12 Patches to use between the 8-12 weeks any advice would be welcome Thanks

[Gambit62 Administrator]

unfortunately you are far from alone in finding that 12 weekly is not frequent enough and finding that your GP will not consider giving injections any sooner.

Some people do find that different ways of supplementing work for them - and even that different forms of B12 do different things for them but some people also find that one form of B12 or one way of supplementing doesn't do anything for them.

I would suggest that you give the patches a go - but other options are high dose sublinguals/oral tablets and sprays and nasal sprays. Some even resort to sorting their own B12 and injecting themselves.

High dose oral (1000mcg + taken daily) is effective as a maintenance regime for some people - relying upon the small amount of B12 that is absorbed outside the ileum which is the place where most is absorbed and where things have gone wrong if you have PA

You might also find it useful to look at the PAS website and may want to consider joining

pernicious-anaemia-society....

pernicious-anaemia-society....

[petergormley in reply to Gambit62]

Hi thanks for reply I am trying the drops but happy with them was thinking about other oral options but think patches would suit me better as you one for 24 hours once a week much easier and less hassle by the way I am already a member of Pernicious Anaemia Society I will finish the drops first before trying the patches

[clivealive Forum Support]

Hi petergormley

If you are in the UK and you are having neurological symptoms you should be able to have your injections every eight weeks according to the N.I.C.E. guidelines.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

It would also be a good idea to ask your doctor to test your Folate level as this and the B12 you are having injected help your iron to function properly and ,make red blood cells.

I'm not a medically trained person but have had P.A. for more than 45 years

[petergormley in reply to clivealive]

Hi just got Dr to agree to test Folate and Intrinsic Factor 2 weeks ago got no results yet also mentioned Antibodys I believe Dr should be advising me about these problems instead of the other way around

[clivealive Forum Support in reply to petergormley]

I hope you get your results soon although why, if you have already been given a diagnosis of P.A. he is testing your intrinsic factor.

Come back and let us know how you get on.

[Hidden in reply to petergormley]

Your GP is precisely that, a General Practitioner, who, to quote one of mine, know a little about a lot of conditions. From reading this blog it is obvious B12 deficiency and PA is a very complex condition so going beyond the guildines and the license for Hydroxocobalamin is something many of us are finding the GP's are reluctant or refusing to do. You may well find yourself knowing more about the condition than your GP, however they can get huffy when they realise it. Seeking your own solution for your problems can often be the only way you get what you need. Fortunately we are dealing with a medication with very few side effects and problems so the risks are minimal.

[MNK007]

I read a review from a guy who was supplementing between his shots with a new oral Vitamin B12 spray called Misol B12 and he reckoned it was a life saver for him...I can see if I can find the review link if you are interested?