Recently diagnosed coeliac and PA.14yrs symptoms.Long fight 4 diagnosis.

[ribbon]

GP says monthly injections adequate. Still feel dreadful. Where does one get 'over the counter' injections some people mention here? Is there a private option? Am fed up with controlling GPs. Would love to be able to look after this myself. Mother got early dementia and too late diagnosis of PA only recently.

[jayneejay]

Hi Ribbon

I ge my injections (Optovite B12) 1.000 gammas it says on box from any pharmacy in Spain, I live in Spain, no prescription asked for , you get 5 ampollas in a box, but you need to break them and use a syringe and needle they are not supplied the box of 5 costs around 3.50€ very cheap, also you can buy a tablet from spanish pharmacys with 3 vitamin Bs in one, (B12, B6, B1) B1 (thiamine) also good to keep mozzys away, stopped my mozzy bites.

All the best to you, hope this helpful, you should ask your local pharmacy or chemist you may be able to buy too..

[ribbon in reply to jayneejay]

Thanks Jayneejay. Do you use one ampolia per day? How do you inject it. Sorry, but I haven't a clue - never did anything like that before. Does it go into a vein, muscle or do you just break the skin? The Irish docs use the one that goes deep into muscle. I wouldn't want to do that myself.

[jayneejay in reply to ribbon]

Optovite B12 should be muscular, I inject in deltoid muscle top of arm where flu jabs are injected, if you look up where to inject B12 on google search it will explain all to you, best find out first so injected at correct depth and site. Yes Optovite is daily but some do less often it depends on symtoms again if you google the type you get all will be explained on there, I cant really suggest how much for you as everyone different ... Jarrow do a good 5000mg B12 lozenge to take every 2 or 3 days, or a 1000mg lozenge for daily, I noe use these, as easy.... Type in Jarrow B12 in google and they are fab, I get mine from amazon uk, with vit C free delivery over £25 ... Take a look.... They have very good reviews Jarrow 5000mcg (5mg) they are cherry flavour lozenge, strong, so split first to find the balance you need..

[ribbon in reply to jayneejay]

Thank you for your helpful response, but I don't understand. I thought if you had PA you could not absorb through the stomach and had to have injections? Or do you need both?

[Hidden]

Hi Ribbon,

I also buy from pharmacies abroad. Its the cheapest option if you are abroad anyway. You can also buy via internet, and there are also ways to get it privately in UK, details can be gained from the Pernicious Anaemia Society, and their forum,

Kind regards,

Marre.

[ribbon in reply to Hidden]

Thanks Marre. I thought this was the P A Society here. It says I'm on pasoc.healthunlocked.com. Do you have the link for the one you mention?

[Hidden in reply to ribbon]

Hi Ribbon,

Know you have found the info, still for others, this is the PAS forum:

pernicious-anaemia-society....

Optovite B12 can be taken by mouth, injected IM, intravenously and subcutain. That is why I like it, no chemical preservatives etc. It costs about £2,50 for 5 ampoules.

You realy do need to be taught how to do any type of injections , perhaps your Mum may help? I found the nurses at my surgery very helpfull, GP needed a lot of persuading...

Kind regards,

Marre.

[ribbon in reply to Hidden]

Thanks, Marre. It's all so confusing, especially with poor concentration.

[William1]

hi ribbon my dr is worse than yours he will only allow one injection once every three months and my husband sleeps 14hrs per day

,go for injections were ever you can buy them or afford william1

[ribbon]

Thanks William 1. Sorry to hear that. It's really disgraceful.

[jayneejay]

Hi Ribbon

Sorry ... Typo error in reply. Should of put Jarrow 5000mcg ( 5mg) not 5000mg..............

[jayneejay in reply to jayneejay]

Sorry again.. typo error..also Jarroe 1000mcg (1mg) not 1000mg..... Phewwwww good luck

[ribbon in reply to jayneejay]

Thanks for correction.

[dusk33]

I thought PA meant you couldn't absorb B12 too so yes, how can a lozenge work?

[ribbon in reply to dusk33]

You're right, often PA means you can't absorb B12 through stomach because of antibodies, but with the sublingual lozenge (which you allow to dissolve under tongue or in mouth) it goes through the mouth membranes into the bloodstream bypassing the stomach. There's a lot to learn, but I've been reading up a bit. Good luck and keep reading up on it. GPs are a bit clueless it appears.