Clear new website

the new version of the PA website is to be welcomed. It looks good and is full of information - but I do wish that on the site for professionals and treatment more emphasis had been given to patients who desperately need more frequent B12 injections that the recommended dose. It would have given more power to our elbow when we try to negotiate with our gp's who wont budge!

8 Replies

  • I would imagine that the PAS is waiting for some solid evidence on the subject - like that expected from the current survey - - on the frequency of prescribed injections.

    Once the results are in from that then it should be more difficult for doctors to come up with the line that's become so familiar - "I can't prescribe more frequent injections. Nobody has them more than once every two months as it's not licensed for that."

    So, if anybody has injections prescribed more frequently than 8 weekly, get on there and complete the survey.

  • The Survey will not let me take part.

    I have low (very low ?) B12 D 103 < 180-1000 and "significant sensory motor polyneuropathy." but negative IFA. My GP stopped the injections after 5 loading to wait for 3 months for a blood test, B12 then 343 > 180 - 1000. You are now Normal - wait 6 months for retest.

    Shouldn't people like me be part of the Survey?

  • I'm not allowed to take the survey either, because I've already participated. So I can't check to see if it's still active.

    IIRC, the survey was for people who are being prescribed injections, so you wouldn't qualify.

    The PAS run various surveys to investigate various aspects of B12 deficiency. I'm sure it won't be very long until there's one that will be relevant for you.

  • Thanks.

  • I've just done the survey at 07.30am on Wednesday 29th June 2016 - no problems

  • Cool!

    beginner1 Are you a member of the PAS? Surveys are open to members only, to make the results less likely to be tilted by bogus respondents.

  • Is the PAS (and the survey) really only for people who have a definite medical diagnosis of PA, via tests for B12 levels, Intrinsic Factor, Parietal Cell Antibodies, MMA? That's what the survey suggests. But as we know it is very difficult to get this diagnosis.

    What about most of the rest of us who either weren't ever properly tested, or were sero negative in terms of antibodies, or who have severe symptoms but fell into the 'grey area' for serum testing? I'd like to complete the survey, but my GP hasn't accepted I have PA. They have accepted I have PA-like symptoms which are helped by B12 injections but they still think PA is an anaemia and tell me I don't have anaemia. They refuse to read any of the supporting literature as they are too busy.

    So, I currently have treatment, but I can't fill out the survey!

  • No Frodo I think anyone can join. It used to be £20.00 for life but I understand that cost will be going up soon - if not already

    It's worth joining whatever the cost as it give access to all sorts of helpful material.

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