can I have my inj every eight weeks instead of every twelve?? My Dr says not.

[Paris199]

Please help my Dr says I can only have my injections every twelve weeks as it's dangerous to have them any closer together, but by week ten I am on my knees with tiredness and generally feel unwell. What do I say to convince him I need it every ten weeks?????

[wedgewood]

There is nothing you can say, except to repeat how badly you feel after 10 weks. I have been down this road, and my doctor would not budge.Just mad me feel bad about myself. It is NOT true that it is dangerous to have them more often. Martyn Hooper the founder of PAS, injects himself with 5mg ofMethylcobalamin every other day and has done for 10 years. I have copy of a document of the Dutch medical council that states you cannot overdose with B12. Any that can't be absorbed is excreted in the urine. I'm not at home at the moment or I could give you the link to find it. With the helpof kind people on this site, I now self-inject once a week to keep myself feeling well, and have more or less got rid of the numbness in my feet that I had . You could decide to do this. You would get all the help you need here. I was very nervous at first, (a large gin and tonic helped!)but now its routine after 15 months. Alot of people do this. Some tell their doctors. I told mine, to her disapproval of course.She didn't say B12 could be toxic,but intimated that I was imagining things. Think it over, and get back to this site if you want to know more about self-injecting. All the best to you .

[Paris199 in reply to wedgewood]

Thank you so much for your reply. Yes I think self insect is the way forward. Going tomorrow for my jab so will have one last try for them closer together. Thank goodness I found this site.

[Hidden]

Complete rubbish. I injected 2ml every day for months. Doctors wrong opinions are dangerous not B12 injections!

[Secondchance]

If you have any neurological symptoms all the guidelines say 2 month maintenance so that is one avenue. There is no evidence it is dangerous.

[shevie in reply to Secondchance]

Just feeling wiped out or sleepy is evidence of neurological symptoms, therefore you are entitled to a jag every 8 weeks. The GP's own guidelines will tell him/her that! Selective reading again! Actually, if you are showing neuro symptoms the guidelines (the same ones the GP's get)say you should have a jag every other day until there is no further improvement. I see no reason why you can't start afresh and do this now. Print off the articles sleepybunny has given you links for, take them with you, along with a strong minded pal, if you have one, wave them under his nose (the gp's not the pals!) and ask if he is willing to take responsibility for your worsening condition, because someone somewhere will have to at some stage

[Paris199 in reply to shevie]

Hi

It's all sorted. Took all the info to GP. He has agreed I can have inj every ten weeks. Yipppeeee.

Thanks for your help x

[victoria1000 in reply to Paris199]

B12 1000ug taken in tablet form every day is safe

[Paris199 in reply to victoria1000]

I can't take the tabs as I don't absorb them...no intrinsic factor x

[shevie in reply to Paris199]

Dont be surprised if it proves not to be often enough. Just keep at it

[Sleepybunny]

Do you have neuro symptoms? Have a look at this list

pernicious-anaemia-society....

There's more info on neuro symptoms on

b12d.org and b12deficiency.info

The reason I asked is that you could check if you were treated correctly when you were first diagnosed.

The BNF (British National Formulary) Chapter 9 Section 1.2 (or might be section 2.1) gives info on how to treat patients with b12 deficiency anaemia including those with neuro symptoms.Your GP will have access to a copy. The BNF is copyrighted.

Have you looked at the updated BCSH guidelines on cobalamin and folate deficiency?

Or the NICE guidelines?

cks.nice.org.uk/anaemia-b12...

My understanding is that patients with neuro problems should have an injection every second day until they stop improving. After that I think they are supposed to receive an injection every two months. I believe that in the case of someone with neuro symptoms and B12 deficiency, it is recommended that they see a haematologist.

If you have neuro symptoms were you referred to a haematologist when first diagnosed?

Did you receive the correct loading doses for those with neuro problems?

If you have neuro symptoms perhaps you can ask why you are not getting injections every two months?

[Paris199 in reply to Sleepybunny]

Yes I do defo. The sides of both my big toes are completely numb. I often suffer dizzy spells - never even thought it could be to do with PA. Thank you. Back at Dr tomorrow so gonna mention all this. Infact I will take my phone and show him. Why do we all seem to have such a fight on our hands when we only want to feel well. Arghhhh thank you for your reply.

[Paris199 in reply to Sleepybunny]

THANK YOU SO MUCH. I took all your info and everything everyone else said to the Dr. I am lucky as my injection does last 9/10 weeks.

After reading everything the Dr agreed. Injections now every ten weeks YIPPPPEEEEE !!!!!!

Thank goodness for this group xx

[Secondchance in reply to Paris199]

Very well done!!!

[Gambit62 Administrator]

I presume you are based in the UK.

Your doctor is completely wrong about injections being dangerous but there is also some misleading information in that respect in the NICE guidelines where it says that injectible hydroxo is only licensed in the UK to be used at 2 month frequency which may be where the rubbish is coming from.

Not sure where the remark about licencing comes from - it certainly isn't part of the manufacturer's standard instructions in other countries - I buy mine from Germany - where it is available over the counter and that give standard as 1x4 weeks so can only assume that it is something in the UK/NHS regulations ... or else the remark isi just a bureaucratic fart that is really making the whole system stink.

Know this doesn't really help you in dealing with your GP.

Hydroxocobalamin is used to treat cyanide poisoning - dosage is 5g administered over 15 minutes with a further dose 30 minutes later if required. That is 5000 x the amount you are receiving in a loading shot ... which does rather imply that there isn't going to be any problem with having shots more frequently.

Could you afford to source B12 yourself - costs about 70p for an ampoule - from outside the UK and self inject?

[Paris199 in reply to Gambit62]

Hi

Yes I am in the Uk. My doctor reckons he's not allowed to give it to me any closer together than twelve weeks, from reading this I know I am prob more lucky than most PA sufferers as I last about nine weeks. But for the last three weeks i feel horrendous so tired but can't sleep and can hardly chain a sentence together.

Yes I can afford to buy some just don't know where to get it. Also a bit scared of self injecting as the B12 hurts. But anything to stop this awful feeling. Thank you so much for your reply.

[KiPeRi75 in reply to Paris199]

When you inject yourself (I do IM into my thigh) it doesn't hurt if you do it slowly. I take about 10 secs to push it in whereas a nurse does it in 1!!

[KiPeRi75 in reply to KiPeRi75]

Try asking the nurse to do it really slowly next time and see the difference!

[Gambit62 Administrator in reply to Paris199]

I was pretty apprehensive the first time as I had really bad experiences of subcutaneous injections following an operation - was told to do it in the stomach which really wasn't right for me - find the thigh much better and now pretty second nature. I do subcut rather than intramuscular - probably not as efficient but means I don't have to pfaff around with lots of needles - use an insulin needle - I source from mycare.de but others use goldpharma and are quite happy with that. There are lots of posts and even links to videos on how to inject so ...

Hope it all works out.

[tiredb]

Hi! Your Dr is WRONG. See a different Dr if you can, a younger one may help. I got my injections changed to every 8 weeks and it has made a huge difference to me. I'm actually going to ask for 6 weekly ones.

Keep pushing your Dr as you are entitled to be treated fairly and he/she needs to be informed. Good luck x

[Penni]

I had the same problem as you and many others on this site. I now have an arrangement with my GP and the district nurses, the GP provides my b12 ampules and sharps box and I have provided my own syringes and pre-injection swabs (purchased through medisave). I then give myself my b12 injection once a month when I need it. So far it's working out much better than having constant disagreements with my GP's over my treatment

[Rosiered]

First I heard of it being dangerous!!! My Doctor reduced mine from 12 weeks then to 8 and now I am happy on 6 weeks. I have not had any risky side effects and feel better now and before! I would change your doctor.Good luck

[jingles64]

A very understanding nurse at my GP practise agreed that I needed B12 injections more frequently and I now have them every 10 weeks which does seem to make a difference though I would like to go 8 weekly if it were possible. My GP was of the opinion that 6 months was often enough!