Conference

Phew! What a day.

Just back to my hotel for a much-needed lie down. So much interesting stuff jammed into a single day. Lots of positive news of interesting things happening or on the horizon.

Many thanks to all those involved in the organisation. It all went very smoothly which, from my experiences of such things, means there was some seriously hard work in the background.

For those who couldn't make it - I strongly recommend watching the video when it gets online.

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  • I have tweeted... Especially when I saw Chris Steele was talking... Enjoy, pace yourself and hopefully I will be there next year... 😊

  • Me too Scorpiojo 😀

  • I will be able to tell you a lovely story about my friends in the US who I met through a Glaucoma forum... Wills Eye institute and I flew over and met them... We are still in touch today... That was in 2001!! We may have health issues but you can really bond over the help shared.... 😁 There's nothing better than being able to say Thanks in person....

  • Sounds lovely Scorpiojo...I'll look forward to hearing about it.

    I've also made a forum friend in the USA...and who knows, perhaps we'll be lucky enough to meet one day too 😀

  • I went to Florida and flew upto Philly... Such a lovely few days... I have pictures too... I'll bring a few... But we can make some new memories next year in Blitey xx

  • Excellent news fbirder. Really please you enjoyed the day...and positive news about happening things most welcome.

    Can't wait to see the video 👍😀.

    Enjoy the much-needed...

  • Yes it was an excellent conference . I'm so glad that I went . It all sounded very hopeful, but we were cautioned that any advances in the treatment of PA will happen slowly . All the speakers , and there were 11 , were first rate , and gave us great insight into what they were doing to solve the conundrum which is PA ,and it's treatment .

  • Sounds wonderful and I can't wait for updates and news... X

  • did frequency of b12 injections come up?

  • Yes, Rachel Barnes sent some time trying to find where the current 3 month recommendation came from. IIRC, she said that they were hoping to get the BNF to have a look at the current recommendations in he light of the PAS survey on frequency of injections and the data showing how safe B12 is.

    The hope is that they will change the license quite a bit so that doctors can prescribe more frequently without going 'off-label'.

  • Well done for traveling, that was a fair way to go for you wedgewood Looking forward to all the info when we get it.

    Mary

  • Recently read somewhere (maybe here) about licensing of B12 injections in the UK, that the medical treatment guidelines follow on from those even though they are arbitrary and need to be changed. If I've understood correctly. Was this addressed at the conference at all? It seems like something that could be changed if the right people were involved and could make a big difference.

    Also the lack of appropriate medical training for doctors in this area.

  • It was addressed. It is being looked into. I can't remember exactly who it was, and my notes are currently in my briefcase, in my luggage, on the luggage rack on the train - but I'll check it out when I get home this afternoon (bloody cheap tickets - this train stops everywhere).

  • It was Sister Rachel Barnes who has been looking into the strange lack of evidence for the current recommendations in the BNF. She is, along with the PAS, looking at licensing B12 for subcutaneous self-administration by patients.

  • Excellent. Fingers crossed!

  • Logical analysis?

    The BNF recommendations are not supported by evidence.

    Therefore the recommendations are invalid.

    So no doctor can do wrong by ignoring them. Or at least the bits for which there is no evidence. Surely no-one can be held to account for ignoring an invalid recommendation?

    (Reminds me of the - probably apocryphal - story of a regime which declared that pi is exactly three. Engineers had great difficulty with that. :-) )

  • Yes I agree it was a really good conference. Lots of useful information and lots of things to look forward to, in the 'near' future I hope!

    Fbirder.. did she say that the Danish shots (hydro)are better then the uk or German ones? Because they are oil based and are released much slower. Or have I got it wrong as it was freeezing at the back of the room were I sat lol

  • In the presentation by Willemina Rietsman, the Danish shots seem to be better because they are given as a suspension in oil. That slows the absorption from the injection site into the blood. It's a lot like the hydrogel being planned by Anna Guildford, except that is even slower release.

    I'm going to put together a brief explanation as to why these approaches may be better. But it'll have to wait until tomorrow as I've found the weekend quite exhausting and need a rest (not that the hounds are going to find that a reasonable excuse).

  • Very interesting. Someone I was talking to recently (on a forum? in person? I can't remember!) mentioned they once had either a B12 or D shots, but it was suspended in oil, and was therefore a bit (quite?) painful. Would be interesting to see if that's the case with the oily B12...

    So am I correct in assuming that the researchers/doctors assume that slower B12 absorption is desired, and therefore potentially SubQ is better than IM? (The assumption makes sense - once in the bloodstream, it'll get cleared out quickly, whereas if it's just hanging out in the interstitial space it's not going to get recycled).

  • Yes, slower absorption would be desirable. I'll put together a post explaining why a bit later today.

    I, too, thought that subcutaneous would mean slower absorption that intramuscular. Although I could find no research into B12, there was some data for or drugs, with variable results.

    For some SC meant faster absorption, for others it was IM. With IM the thigh meant faster absorption than the arm. For SC absorption tended to slow as BMI increased.

    But the differences weren't anywhere near as large as those promised by the hydrogel preparation.

  • Thank you fbirder. Yes that's what I thought was said too. Just wanted to check with you incase I misinterpreted it. Awe I can understand you must be so tierd.

    Rest up, speak soon :)

  • Shock (or maybe not) revelation of the day was by Hujo Auwerde. He spent 6 years training as a haematologist. Of that time the total spent on B12 was..... dramatic pause .... one hour!

    That was in The Netherlands.

  • The second shocking thing was the lady in the audience who stood up to tell us that her grandson was training to be a (doctor). When she asked him what he was told about Vit B12, apparently he was told that it 'wasn't important'. No wonder most doctors have no idea.

  • Oh..when you feel up to it...

    were can you get the Danish shots from? Is there any recommended website.

    Thank you

    Raven321

  • Where will I see if its online ?

  • Somebody will have to edit the video, so it may take quite a while - a week at minimum would be my guess. I hope they'll post it in several episodes rather than one long chunk.

    When it is available it'll be announced on the PAS website and will be passes on to this forum quite soon after.

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