Hello everybody.. I'm a 22 years old girl.. My mother has Psp .. I can't be able to accept this terrible illness.. I've read recently about Davunetide experimentation.. Is there anyone who can tell me how this experimentation is going and its results up till now? Are there real possibilities that Davunetide will be an effective therapy?
Hope you will answer.
Thank you in advance
hI
I hav ehad psp for a number of years dixd dec 2010
and could no t go on the DAVunetide trial as it is in nasal sprya form adn i already use a sprya for allergies
but ther e r some hopes hta tit maywork in slowign the PSP
LOL JILL]
I do think there is a real possibility. The trial is winding down now and I guess results will be published soon. My mum was on the trial but it was a blind placebo based one and we will only find out in a couple of months whether or not she had the actual medication. I do believe that she was relatively stable whilst on the trial but this could be due to anything - PSP is such a great unknown.
My thoughts are with you - the time after diagnosis is an incredibly difficult time. I remember how I felt, but hang in there, it gets easier. It is amazing how you can deal and cope with things you never thought possible, given enough time.
Love
Cate
x
CateT, I'm not an expert but I'll share what I know. The trial of this drug isn't over yet. I have asked about it with our specialists. They say that once the TAU that affects the brain in PSP patients has damaged that part of the brain there isn't much likelyhood of them rebuilding. Over a long time, they say, it's possible they might "repair" a bit but never back to normal. If the drug stops the progression it will leave patients sort of stuck in time at whatever point they are in the disease. I wish I knew better news to give you. Again, I'm no expert on the brain restoring itself. Perhaps someone more knowledgable can respond. My heart goes out to you. I'm much older and having a tough time dealing with PSP, it must be awful for a younger person like yourself. Hang in there and stay strong!!
hi even if they stayed at the same stage for people relatively new to the illness this is progress dont you think x
Yep but each case is different.
yes i know but i suppose anything is better than nothing as all we have at present is hope x
I think the Brighton one is winding down and yes, I agree Jim,no one has ever said to us that it will restore lost function, only that the hope is that it will stop further deterioration. Even that they are unsure of so it is best to be very conservatively optimistic. Unfortunately, I also think it will be quite some time before the medication is available. My mum has stopped it and now there is no talk of her being given any more for now.
x
Hi Rosaria.Yesterday our neurologist (she has expertise in psp and she is a really good doctor) informed us that the trial for davunetide has been completed and the results are expected by early 2013.She contacted the company that made the trials, but they didn't give her any information about the results, i mean if the drug works or not.However, she noticed that the company feels confident that davunetide will be effective.Her opinion is that if davunetide is working, it will stop further damage of the brain.She also told us about tydeglusib, another drug that was tested by a spanish company.Unfortunately, the results (that will soon be published) are not good, the drug is not effective.I am ten years older than you,and yes, it's very tough to accept a disease like this.I wish you and your family the best, John.
hi john did the psp specialist say roughly when in 2013 early or late as this is a glimmer of hope and would it be available on the nhs? plz plz let this drug work for all the psp patients sake god it would be a miracle x
Hi John. Thanks for your answer. I hope that the impression your neurologist got will be true. Do you have any news about that?
Thank you
Rosaria
Hi Rosaria.I am sorry i wasn't able to reply sooner.I don't have any fresh news about davunetide unfortunately, i asked the neurologist lately and she told my that we haven't something new yet.Let's hope we 'll have the results of the trials soon and above all let's hope that this med is working.I send my best wishes to you and your family.
hi rosaria i a m new to this illness too with my dad so if you want a shoulder to cry on contact me. i have never heard of this treatment but plz let me know if you hear anything take care xxx
Oh please God let it work !!
my name is Barbara and I was diagnosed with pssp 2 years ago almost three years. I want to know where I can get davunetide please let me know.
Barbara daughtry
mombcd1@yahoo.com
can I buy davunetide
can I buy davunetide
when will davunetide be available to the general public?
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