72 weeks! It's been a long time. Once more back to the Nuffield Ward at NHNN for another day of the usual tests and trials. Very little new to report. Ana has gone back to her supervisory role and there is a new nurse, Tiggy, who is the primary person during the day. She is still learning the role and unfamiliar with exactly how long everything takes. As a result, I have to go back in a week to have the Echocardiogram at UCL because she booked it too late. No too inconvenient for me because I live only an hour away, but this might be more problematic for others.
The tests were as usual, although this time I did fall over on the 6 minute walk and this meant that they didn't finish the test. No harm done.. I was all up for continuing but they weren't.
The only new thing was a piece of paperwork I had to review, which was about an amendment to the trial after the 96-week period is over. Basically they will move everyone onto the drug after this, but because the drug dose has to be standardised, everyone will be on 10ml per day regardless of how much you take now.
In terms of the trial itself, I think the expectations are now that the drug will simply halt progression and nothing more. Dr Krishna repeated the same thing when I was there last at the 48-week update. While this is disappointing compared to the high level of expectations at the start of the trial, I'll take it. Hopefully this is enough to clear the NHS hurdle for providing the drug in the future.
Hope you're all fine
Angus
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Thanks for the update Angus! I was just introduced to a new research coordinator who didn't record the walking test correctly, so they asked me to do it again the next day before I left. I was curious how they were handling the drug portion after the trial is over. I would definitely like to continue to use it as I think it has brought more good than bad, although I do plan to change my diet and exercise once it's over to lose the weight I have gained thus far. (Which thankfully has been steady the last few months). I'm sure there are many hurdles with the drug post trial to let those who participated keep it, for NHS and also the FDA here in the US.
Hi, I had my 18 months appointment last week and I was told some patients in the Netherlands completed the 2 year trial in December and have started the extended study and I was asked if I wanted to extend also, I'm back in June and have a 3 week follow up appointment in July which they will use as a baseline for the extended study starting again with 10ml!
They asked if I wanted to do the extended study? I said definitely! It will be interesting to see if I'm on the drug or placebo! I don't think placebo would make me gain 8Kg though but the placebo effect is nuts!
In the Netherlands there was nothing on the form about the extended study? I was only asked last week if I wanted to join it? as some patients completed the trial and started on the extended study in December?
The thing I had to sign was basically an addition to the documents signed at the beginning of the study. It may well be that by the time you joined, you signed an already updated version
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