WHAT HAPPENS TO ALL OF YOU THAT WAS ENROLED IN DAVUNETIDE STUDY WHEN IT STOPPED?

Hi to all of you. As I write in the title, I'd like to know if someone of you ,that was enroled in the Davunetide study, noticed some difference in his state when the cure was interrupted.

It's strange, but nobody writes about this in the PSP blog.

But It could be interesting to know.

Many thanks and happy easter.

12 Replies

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  • My husband was on the trial in Liverpool and he actually stopped taking it before the end of the trial because there was no good results at all. We thought he must have been on the placebo but that was not the case.

    There was no difference after he stopped taking it apart from the natural progression of this dirty discusting cruel disease

  • To all,

    I was taking the actual drug Davunetide administered through Mayo Clinic in Jacksonville, Florida. I did not have any progression of the disease for the 12 months I was on the drug, but I faithfully followed the dosage instructions as required. I completed the trial in October of 2012 and Allon, through the Mayo Clinic, just notified me last month that I was actually receiving the Davunetide and not the Placebo.

    Bill Hall

  • hi there, my husband was on the study and we found out that he was taking the placebo but we actually saw good results. even the dr. was surprised that he was not on the drug. he has been off it now since oct. and i deffinatly see a decline even if he was on the placebo. he is not doing too good now. he has taken to the next stage of psp. what a horrible illness. im very upset to say the least. god should give him and me strength to go on. it is so difficult to watch. all the best to all. bubbie

  • So sorry to hear this, Bubbie. You're in my thoughts & prayers.

  • My husband Ron was in the trial and completed his year. We really thought

    the drug was helping. He did go from a walker to a wheelchair during the

    trial but has maintained his health in most other areas.

  • Many thanks, for your informations, but now ?

    Dear Bill Hall, form Oct 2012 until today you're in the same condition?

    And Your husband , Greebee, his health today is in the same stage of december 2012?

    I think this is important to Know.

    Thankyou.

  • If there were good results does that mean the drug was partially working or could it be that the mental wellbeing of the taker believing it was working was responsible? That can happen sometimes. Another possibility is that there were so many side effects reported that even though it was helping some patients it wasn't worth the risk for ALL patients to get on the drug. The company would never admit this for obvious reasons (legal action). I have to go with the results posted by the company (didn't work) who obviously would want good results for monetary reasons. They poured a lot of money and efforts into the study so a negative result would not be in their interests. Just my two-cents worth.

    Jimbo

  • it's a real shame it was a a glimmer of hope for my dad and other sufferers. if there showed some positive results why did Allon decide not to continue?

  • My husband was also on the trials but in Brighton. He comp.eted the trial but there was no evidence of any effect of the drug. We thought he was on the placebo but were later told he had been on the drug. It appears that there have been no positive outcomes of the trials but we haven't been formally told this.

  • Davunetide clinical trial measured outcomes against 2 rating scales with no benefit found. The drug has been shown to be slightly effective in mild dementia in humans and they thought they had some promising results in animal tests. These have not translated into success in PSP patients. Without going into detail, the drug targeted the faulty tau protein that (among other things) normally stabilises the microtubules in the neuron.

    The problem with this approach in PSP (and other diseases like Alzheimers) is the fact that these proteins start to go "wrong" some 20 years or so before symptoms are seen. It's like trying to stop a runaway train. Then there is some current research that indicates PSP neuron death may have other factors other than just the tau protein.

    Let's hope there may be simpler biomarkers found that can be used for early screening for PSP and other neurological conditions caused mainly by some faulty protein destabilising healthy neurons (along with mitochondrial dysfunction which may turm out to be the originator of all these diseases).

    While the above is a rather technical, on a subjective note, the failure of this drug trial is a big blow for PSP sufferers. My wife is 4 to 5 years into this condition and all of us on this forum would have been doing cartwheels if it had shown any signs of success. All we can do now is to continue to support each other on this forum!

  • My husband was on the trials in Hayward's Heath. In the very early stage of the trials we thought we could see some improvement or stabilisation of his symptoms but that was not sustained. He was on the drug and not the placebo. His decline continues, but his condition seems to differ from day to day. Ironically, although he has many many falls in the 6 years of this disease, he is only now falling backwards which as I understand it is one of the markers in identifying PSP in the first place.

    There is no medical care except platitudes as the medical profession is helpless in the face of PSP and in most other cases of neurological diseases. This will remain so until the we understand just how the human brain works.

    dorothy-thompson

  • My mum was on the Brighton trial and I thought that she seemed quite stable in the year she was on it. No improvement however. She declined very sharply around the time she came off it but it also coincided with her first chest infection which had a profound affect on her health. We have since found out that she was on the placebo so it must just all have been coincidence. My mum passed away on the 5th March from complications from this wretched illness.

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