I have for the last thirteen months been involved with a trial of a new drug aimed at slowing progression.
This involved a monthly appointment at Salford Royal to have a chemical injected into me.
It was a blind research study, which meant that for the first twelve months I may have been receiving a placebo drug instead, but after twelve months all participants were to have the real thing.
This trial has recently stopped due to the current pandemic and I did n’t really feel that it was doing anything at all.
Since being off the drug I have now noticed my condition slightly worsening.
Has anybody else took part in this trial and noticed any changes in their Parkinson’s, during or since ceasing the alpha nuclei treatment ?
I’m sorry to hear that your condition has worsened.
We actually have information on the Alpha - Synuclein on the Parkinson’s UK blog which you can find here: https://medium.com/parkinsons-uk/trials-to-treatments-targeting-alpha-synuclein-dd4ba2797d20
You may hear back from some of our members with their own personal experiences, however in the meantime, I think you you should speak to your GP or Parkinson’s nurse about the changes you have noticed with your condition. If you’d like to speak to someone about this sooner rather than later, you can give our helpline a call and speak to one of our advisers on 0808 800 0303.
I hope you find this information helpful.
I am in the US and also in a drug study. Could you tell me what company the drug is from.
Thanks for the reply. I’m in the alpha-synuclien with Biogen in the US. I just contacted my study coordinator and she told me ours was still moving forward. I hope your study resumes soon. I too thought I wasn’t on it in year one. But now I’m not so sure. My tremors had stopped during the first year, but I attributed that to retiring…Could have been the trial drug.
I wish you the best
Thank you for the repl. I’m pleased to hear that the drug appears to be working but reducing stress also has a beneficial effect.
sorry to hear about your clinical trial being cancelled. Am waiting to hear about mine.
Did you see that email the other day from Amelia at Parkinson’s UK?
Professor Anthony Schapira and his research team at Queen Square Institute of Neurology, UCL, are looking to identify a large number of people with Parkinson’s who may have small genetic alterations in genes such as LRRK2 or GBA, which are known to be associated with Parkinson’s. Email [email protected]
I believe Salford Royal is one of the sites.
I have heard of this trial and I will chase it up.
I applied for this trial completed the application and was accepted. However I was then notified it was being put on hold because of the Covid 19 virus.
I also retired last year and my symptoms eased, but I’m afraid they have worsened this year especially since my wife and I locked down. She is at high risk being on immune suppressants.i fear it may be many many months before she will be free to join the local community.