B12 Injections

[smiffy0064]

For over 5 years I have been having B12 injections every 12 weeks. But last week I was Told I could not have my injection until I have had some blood tests, And a Doctor checks them out. He then will decide if I stay on every 12 week or go on to every 6 Months, Well I had the tests and now have to wait until I hear from the Doctor. Is this right for some nearly 70yrs of age.

[helvella]

It is not right whatever age.

In this age of so-called evidence based medicine, where is his evidence that 6-monthly is better than 3-mothly? (To make that change, I believe it has to be justified as improving your status, not simply keeping you where you were. Otherwise it is a risk without any possible benefit and therefore not capable of being rationally supported.)

I know that my partner's death certificate specifically identified PA. Yes, he was supposedly being treated.

Rod

[helvella in reply to helvella]

The official Summary of Product Characteristics document states:

Maintenance: 1000 micrograms every two to three months

medicines.org.uk/emc/medici...

Where did your GP dream up 6 months from? Bad enough that 3 months appears to be entirely arbitrary. (That is, nothing justifies it except not enough patients have complained strongly enough to get it overturned.)

GPs need a positive and good reason to deviate from the SPC.

[engels]

It's completely wrong. There is no blood test that will tell a doctor how frequently you need injections. Are you free of symptoms on the current 12 week regime?

[Hidden]

Hi Smiffy,

as others have already said its seems very wrong, the only reason a person goes on 6 monthly B12 injections is when their B12 def is proven to be diet related ie vegan etc, and that would be at diagnosis stage not 5 years later. Do you know why you initially were diagnosed as B12 def, what the reason was/is for going on treatment 5 years ago?

The New British Society for Haematology Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders clearly recommends (even if you are not positive for IF anti bodies) treatment is for life, see:

bcshguidelines.com/document...

"Recommendations

 Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).

 Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response. (Grade 2A)"

I would make sure your GP will accept full responsebility for any harm done to you by him with holding your treatment, and I would recommend requesting a referral to a haematologist if you feel unwell as a result of not being giving you B12 treatment.

I would report to your GP immediately if symptoms of neuropathy develop. Naturally after 5 years of B12 treatment your bloods will not show a deficiency now. Perhaps your GP is looking for something ells?

I hope this helps,

Kind regards,

Marre.

[prouisab]

I was told the same thing by my doctor and was left without treatment for 3 whole months and was severly affected by this. (numb limbs, dementia, anemia) it is absolutely wrong for him or her to ask you to wait. If possible, ask to maintain treatment and test your levels right before your next injection to give you an idea of how low you get in between injections. I hope this helps. If I can save another person from the horror I went through because my doctor wanted me to stop, I would be so very happy...Good luck.

[Thomas1944]

Wow...I have just read this and have to sympathise .I am in exactly the same situation. I moved house 5 months ago.my previous doctor had no problem with a B12 injection every month,but now after blood tests which I believe have no absolute proof one way or another to determine the need my new surgery ...I,ve seen 3doctors......say it is only necessary once every 3 months....I can really tell the difference,numb fingers ,toes,forgetfulness etc etc....

I suggest you join the Pernicious Anaemia Society ,founded by a very knowledgable man,Martyn Hooper....He is on a very serious mission to change this one rule for all set by the government .

I hope you get some satisfaction.Also go to a site Goldpharma uk which is German company supplying genuine B12 and all the necessary equipment.i.e needles..I,m going to ask a friend who is a nurse to inject for me...

Good luck with it ,rattle cages ,it,s your life,you know how you feel.

[gillsie]

It seems so arbitrary how people are treated. It makes you want to weep. Definitely fight to receive jabs frequently enough to keep symptoms at bay.