Final visit for the MADE Trial…..

Yesterday saw my final visit for the drugs trial I’ve been doing for the last 2 years.
I’ve been part of the MADE trial, taking the drug Minocycline, or possibly not, depending on whether I’ve actually been taking the placebo all this time.

The drug is currently available as an antibiotic for the treatment of acne and they thought it may reduce inflammation of the brain. My joke has always been that if it doesn’t work, at least I’ll be free from acne – and I don’t remember having any skin problems over the last 2 years!
Participants were either given 200mg, 400mg, or a placebo.

I'll quite miss my giant sized tablet box!
I’ll quite miss my giant sized tablet box!

Damian travelled from Leeds to see me and my daughter Sarah, who has been completing the trial with me. She has completed questionnaires every few months.
Today, Damian had to do the final basic memory tests and Sarah had to be there to complete her final questionnaire.

Over the 2 year period the teams from York and Leeds have all been wonderful and I’ve enjoyed taking part and meeting them all. However, my first criticism of the trial was that there was no update newsletter about how it was going so you never felt part of the bigger picture along with all the other people taking part. It was very much in isolation.
My main criticism is that they’re not looking at what happens when you finish. This to me seems like a missed opportunity.

I’ve asked to be unblinded early, which means they’ll tell me what I was actually taking before the end of the trial. The trial doesn’t complete until 2018, but that’s too late for me to assess the impact of coming off the trial, which is why I’ve asked to be told earlier and they’ve agreed. No one knows if I’ll have a sudden decline, if they’ll be side affects, if some people may have a decline from stopping a placebo which they thought was helping. If my sleep problems will get better.All unanswered, yet in my opinion, very strong data to have.
I have been in email contact with the researcher and we agreed to disagree on the reasons why they’re not doing a follow up.

An interesting clinical trial to be part of and I look forward to reading the outcomes next year, which I hope I’ll be automatically sent because the chances are I’ll have forgotten or be so engrossed in another that I’ll forget about the MADE trial.

AND of course there’s the final important question, if I was taking the actual drug…….will I now succumb to acne…….😊

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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