We have just been told that Allon Therapeutics Inc have reported that, sadly, they found no evidence of the efficacy of the drug Davunetide, in the treatment of PSP.
My husband was on the trials at Haywards Heath hospital in Sussex for 12 months.
dorothy-thompson,
We have heard the same. It is very disappointing. Not at all what we were expecting or hoping. Hopefully there will be something else soon.
Horribly disappointing!
We were all so hopeful that some benefits would be found following the trials with Davunetide. Such a pity we are still no closer to finding something that helps improve the quality of life for those suffering with this dreadful illness. One thing is certain now, we all need to dig deep into our pockets and purses to help fund further research which hopefully will help future sufferers. My hubby has not been on the trials and I can only imagine that those of you out there who did take part, must be really disappointed that there has been no improvement.
Take care everyone and let's hope that one day this horrid illness can be beaten.
SuzieQ x
hi everyone well what a disapointment still press on and hope that one day someone will come up with something i know how much people with psp wanted this to work even if it was just a little thing ah well all of you out there with psp and there carers i wish you all a very Happy Christmas and a wonderful New Year====== maybe next time take care peter jones queensland australia psp sufferer
hi dorothy, i know it is really disapointing i had built my dads hopes up i havent got the heart to tell him its not going to happen. hopefully they will find an alternative we can only keep our fingers crossed. can i ask you you said your husband was party of the trials in his/your opinion did you think it worked?
this is not good news. my husband has psp and was on this drug all year and we did see an improvement. now that he is off it he has been falling. he was doing so much better on the drug. im so dissapointed. now what? we are having such a hard time being off the drug. I thought this would be a good drug. I guess there is not enough funding for the drug. pleasa write me back if anyone lives in florida. I need a friend ..bubbie
I am afraid if I tell my Dad this, he will give up. It was all he talked about all year. What the hell do I tell him?? Ohhhhh this is a sad day....
MJ
I have to admit that I burst into tears on reading Dorothy's message - I was also pinning my hopes on this so called " wonder drug" and on which those who were obviosly taking it during the trials appeared to be doing so well. I feel absolutely devastated and distraught for those who no longer have any access to the drug now the trials have finished, What a let down for us sufferers and also for our carers whom, with all honesty, must have been hoping for a light at the end of their tunnel of getting some respite from having to watch their loved ones suffering this most horrid disease. i only hope that we dont find out down the line that it was more to do with profits than the efficacy of the drug that has caused this catastrophic news - sorry to be cynical but that's my mood today.. much love and happy christmas to all SueW. xxxx
Dorothy-Thompson
Hello and thank you to everyone for your comments. For what its worth, we still don't know whether Harry was on the drug or the placebo and we probably will never know now. At the beginning of the trial, which began last September, as a family we seemed to think that things were getting better, his speech, walking, balance all started to improve. But it didn't last long and all I kept thinking was, if he is actually on the drug and there was no continued improvement, what was the point. But as the trials were not hard to cope with, we continued. Now, a year on, Harry is slowly sliding downhill and like for us all, the going is tough.
Much love to all and a happy christmas.
dorothy-thompson xxx
i have psp and i live in the usa. i want to join a clinical trial but i keep running into a brick wall on the internet. i thought it the quickest and most efficient way to look but now i wonder. i wish i could help you but i do not know how. this is a terrible disease. with no hope fora cure.
what can i do about it?
barbara daughtry
mombcd1@yahoo.com
I am devastated by this news! I have been hoping for the best but now there is nothing to hope for.
My mother was on the trial. We don't know drug or placebo but hopefully may find out in the future. I thought she seemed stable on it. No improvement, but no serious decline over the year. Since stopping, she has a very steep decline but then, in my experience, PSP seems to do that anyway. It plateaus and then goes down suddenly like steps. So, I guess we will never know if her stable period would have happened regardless of the placebo/drug.
to lyndal there is always hope mate dont give up perter jones queensland australia psp sufferer
Hello to all of you.
We'll not have a good Xmas due to this new from Allon. But I'm thinking that something is not comprehensive: I read today too the news published on the Allon website in the past. It seemed that They've had good results. It was only a great misundersting for everyone? What has gone wrong at the end?
I'd liked to read details of the results.
I aspected to read something about this on PSP first home page!
what a shame .my husband was on the study drug and i really feel he got the drug because he was doing so much better on it and now he has slowed down alot. he has psp for the last 5 yrs. we are both struggling with this horrible illness. does anyone live in florida near boca or ft. lauderdale. please let me know also if you are receiving my messages. thanks and have a good holiday ...bubbie
A very big disappointment.I totally agree with Jo above, the company announced that the drug is completely useless and this is not conform with it's previous statements.Where has "the most advanced global drug candidate for PSP" gone?They seemed confident for good results and now they say that davunetide doesn't have an impact even in secondary endpoints!I didn't expect that this drug would be the total cure for psp, but i had believed it would come out in the market and offer some help.
Hallo,
this is Andreas from germany. First: Sorry for my bad englisch. My mother has PSP. She did not take part of the study , but another before. We also hoped that allon makes progress with davunetide. I am so disppointed. A good result would have been the biggest xmas present.
We all have to look hopeful forward.
Andreas
HAVE YOU SEEN ANY IMPROVEMENT IN HIM
I HAVE PSP AND WANT TO KNOW
BARBARA DAUGHTRY
MOMBCD1@YAHOO.COM
HAVE YOU SEEN ANY IMPROVEMENT IN HIM
I HAVE PSP AND WANT TO KNOW
BARBARA DAUGHTRY
MOMBCD1@YAHOO.COM
Yes, what is going on with the newsfeed?
Clinical trials for PSP
How do you get into clinical trials?
Searching for PSP patients using
DAVUNETIDE
PLACES IN THE US DOING CLINICAL TRIALS FOR PSP
