8) I’ve been meaning to tell you about the Memory Clinic & Drugs Trials.

As I have mentioned before Paul & I regularly attend the Rice Centre in Bath, our local city. Paul regular undergoes routine tests both mental & physical to assess his progression with this disease. He has been tested for a few drugs trials at the clinic but not been successful, but last September he passed all the criteria and started on a Six Month Trial for a tablet that he takes along with his usual daily tablet called Donepezil. He is taking part in the third phase of the trial and its a double blind trial which means the clinic doesn’t know if Paul is taking the placebo or the real tablet! The correct name of the trial is ‘Axovant RVT 101 Phase 3 double blind placebo controlled international clinical study’. Its for patients with moderate Alzheimer’s. We have to go every month and Paul is vigorously tested & bloods taken, urine test,weight & heart monitored every time. its a bit like a monthly MOT!!! I also have to answer lots of questions about how Paul has been since the last visit. its all recorded & we sign paperwork each time.  We are already 5 months into the trial and I think we can see a very slight improvement…..His tests last week were really good & his highest score yet!  I’m thinking he may be on the real tablet, and then when he’s not had a good week at home I think its the placebo, I’m never sure!!! We will only know when the whole trial is finished in late 2018.

Only a few people are offered a further 18 month ‘Extension’ to the trial where they will be given the actual proper tablet to trial and you’ve guessed it YES, Paul is one of those people!! He starts the proper tablet in April just as he finishes the six month trial. Hope your understanding all this!!! So we’re thinking lets say that if Paul has been on the real tablet and has a further 18 months on the real one then 2 years taking a tablet that a pharmaceutical company are confident will help Alzheimer’s we have been very lucky. Remembering its a trial means sadly after the 2 years on the tablet that it folks, its taken away from Paul, and hopefully when all the data & results are in and analysed it will eventually be a fully licenced drug to help others and we feel proud we’ve been able to help others by taking part.

4 thoughts on “8) I’ve been meaning to tell you about the Memory Clinic & Drugs Trials.

  1. The drug trial is very exciting ! My husband Tony is too going to be on the extension but we thought it was for 12 months ! Hopefully you are right with the 18 months and I wasn’t listening properly !! The nurse at Swindon has said she’s hopefully the tablet will have a licence before the 12 month period is complete so massive fingers crossed x love to you both and keep well

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    1. Actually you may be right! Because we are both working I wanted all the Clinic dates for the extension and they take us up to May 2018, so you’re right theoretically that may only be 12 months or 13 in our case. Glad Tony is doing well. Keep in touch xxx

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  2. Hi I’m in a similar situation with my husband, we are going to London tomorrow for the first stage of a phase 3 trial drug that is administered every 30 days. Of course the study is blind so it may be a placebo but we remain optimistic. I found out about the trials via the Alzheimer’s website, the clinic have been really good with both their cognitive assessment, general medical work up and organizing MRI and PET scans. We are still waiting for an NHS appointment, so I’m really glad we have started with this journey as I really want to try anything that will potentially slow the progression of AD. Good luck with your treatments. We live in Dorset x

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