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Thread: Invited to take part in Clinical Trial.

  1. #11
    Senior Member beau's Avatar
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    Once I get a reply from my latest email I will ring my GP. Consultant has told me that the already available monthly injections he is very reluctant to try because of the side effects so that rules that suggestion out. There is nothing more he can do for me so has discharged me on the proviso I have 6 monthly tests and any concern to be referred back to him.

    I would have thought that they would contact the GP with your permission as a safeguard, not taking just your word for it. That could lead them to a sticky wicket.

  2. #12
    Senior Member nukecad's Avatar
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    This is (one reason) why I decided not to take part in this trial that I was invited to, read it carefully.
    https://www.bbc.co.uk/news/health-51091083

    The BBC headline is very misleading, I used to expect better of the BBC but now they seem to have sold out to sponsors.
    It is blantant backdoor advertising, using the NHS to advertise private enterprise.

    The headline implies that this is an NHS approved trial - It is nothing of the sort it's a drug company private trial - Read it again.

    I will admit that when I was first invited to take part it looked like a good idea.
    But I've since decided that's only because the drug comapny wants to make it look that way.

    If you are invited to take part then make your own decision.

    Personal note-
    Sorry beau, I understand that in your circumstances it may make sense.
    But for most of us I do not like they way that they are trying to promote this.
    Last edited by nukecad; 13-01-20 at 21:31.
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  3. #13
    Senior Member beau's Avatar
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    My GP advised me not to take part because of the not knowing the side effects. I have a shunt, what would be the effect on that and of course my other medical problems. Apart from that it would effect my travel insurance, I pay enough as it is plus the chances are I wouldn't be able to get it and if I could the already hefty premium would rise to unaffordable and I intend to travel as much as possible whilst I am able and can afford it.
    I have declined.

  4. #14
    Senior Member nukecad's Avatar
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    I see that this is now being hailed as the latest wonder drug.
    https://www.bbc.co.uk/news/health-58393866

    But seeing as it's just under 2 years since I was invited to take part in a 5 year trial study this press announcement seems somewhat early.

    I've set out on this thread my previous thinking, and why I declined to join the trial.
    (Their numbers don't add up for one thing, exaggerated for advertising, and their ethics/motives seemed a bit dubious from the invitation litrature).

    At £2,000 (before an undisclosed 'NHS discount') for each injection you can see why the manufacturers, Norvartis Innovative Medicines Division, want to rush it to market.

    Their own website spells it out (my bolding):
    https://www.novartis.com/our-company
    .. our Innovative Medicines Division commercializes innovative patented medicines ..
    Then look at independent analysis, eg:
    https://www.statista.com/statistics/...es-since-2007/
    Novartis AG, one of the largest pharmaceutical companies worldwide, generated total revenue of about 48.7 billion U.S. dollars in 2019, which is an increase of 1.3 billion compared to the year prior. The company, which is based in Switzerland, made its largest sums (roughly 18.7 billion U.S. dollars) in its home region Europe. Roughly 16.5 billion U.S. dollars were generated in the United States.
    Last edited by nukecad; 02-09-21 at 11:54.
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  5. #15
    Senior Member beau's Avatar
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    To be honest, if I was able, I would give this a whirl as my cholesterol levels are still way high in spite of taking 2 different drugs for it that control it only a little. My high levels are down to an inherited genetic defect. Only one other similar defect in the world is in France. Done the genetic testing for research as have my family. Only one person has got away with it.

  6. #16
    Senior Member nukecad's Avatar
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    Maybe now it seems to be heading mainstream your consultant will be less worried about side effects.

    A trial and an approved treatment are different things.

    And it does seem to be targeted at conditions such as yours where currently approved treatments aren't working.
    Last edited by nukecad; 03-09-21 at 09:40.
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  7. #17
    Senior Member gus607's Avatar
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    I had terrible muscle pains when taking Atorvastatin, but OK with Simvastatin.
    Bit late if you've been injected with something that doesn't work for you.
    Thanks but no thanks.

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