Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

[Silvio Sabo]

This is horrible reading. I had so high hopes for AUT. It was one of the main things that got me through this year. I was suicidal for most part of the last year. Hope of a treatment in the near future got me going. Now I'm devastated. I don't know if I can do this for another 10 years. Please let this not be true!

 

[markoana]

This is horrible reading. I had so high hopes for AUT. It was one of the main things that got me through this year. I was suicidal for most part of the last year. Hope of a treatment in the near future got me going. Now I'm devastated. I don't know if I can do this for another 10 years. Please let this not be true!

Sabo, u wrote my feelings!

I am still 51% sure that this is not true. One very respectable person told me 10 days ago, that AUT has very promising results in phase II...

So i can not believe that this is true! If it becomes tru, 10 more years at least to any new drug! Who is gonna live with that fact :S

 

[Lloyd Carter]

I would like to point out that there IS a chance that T can be relieved from something OTHER than a drug. In this case it COULD be far less than a decade. Not saying it's LIKELY, just saying it's POSSIBLE.

 

[derpytia]

And this is why I did not want to get my hopes up for this drug.

 

[David Ho]

In UK fake calls are common! U all know for this one about Kate Middleton.
http://www.theguardian.com/world/20...call-duchess-cambridge-australian-djs-inquest

Lets hope AUT call, was something like this one...

I didn't get any call from Autifony. I got a call from the same person who recruited me at the hospital. People with whom I've exchanged dozens of e-mails and met personally.
I sincerely hope this is a monster cock up from someone (including me) but the call was very real.

The same way it's easy for messages to get lost in translation it's also easy to extrapolate from 2 positive reports that this is the miracle drug. As Lloyd Carter said it's really positive that we seem to finally be understanding the problem instead of just blindly trying drugs targeted for other conditions and see if they work on Tinnitus. I believe this is really a stepping stone. It might take a few more rounds but Autifony are doing a great job and they will deliver some relief in the near future.

 

[Silvio Sabo]

Sabo, u wrote my feelings!

I am still 51% sure that this is not true. One very respectable person told me 10 days ago, that AUT has very promising results in phase II...

So i can not believe that this is true! If it becomes tru, 10 more years at least to any new drug! Who is gonna live with that fact :S

I really hope you are correct. It just doesn't make sense that they wouldn't update their homepage and that the latest update from just two weeks ago on clinicaltrials would still say "Recruiting".

And this is why I did not want to get my hopes up for this drug.

I understand but without that hope there is a big chance I wouldn't be alive right now. I was already considering which way to do it and writing a suicide note. So I had to cling on to something or just off my self right away.

This condition is barely bearable and the only thing that keeps me going is that there will be some sort of relief, AND SOON. I'm 32 years old. If I just think of having to live like this for another 50 years (my life expectancy), and perhaps even having it get worse somewhere down the road.... I just can't! I can't do that! There is no way I can see my self survive that long... I'm sorry but I just can't. I won't!

 

[Silvio Sabo]

https://www.tinnitustalk.com/threads/the-story-of-gaby-olthuis.4381/


I am not the only one to feel this way. If you look at the links above you will see that there is a woman that actually got her request for euthanasia approved. She has as far as I know gone through with it and is no longer with us (God rest her soul).

 

[markoana]

https://www.tinnitustalk.com/threads/the-story-of-gaby-olthuis.4381/


I am not the only one to feel this way. If you look at the links above you will see that there is a woman that actually got her request for euthanasia approved. She has as far as I know gone through with it and is no longer with us (God rest her soul).

GOD BLESS HER!

So wonderful woman, terrible to watch but in her eyes u can see all pain that she had. This was so so so hard for me to watch few months ago. Hope she has peace and silence now, after 13 years of suffering.

 

[Mark662]

One very respectable person told me 10 days ago, that AUT has very promising results in phase II...

What "respectable person"? Can you be more specific as we are all hanging by a thread wanting to hear real, authentic information, not vague anecdotes. Thanks

 

[RaZaH]

Please people, hold your horses..
Let's have this verified before tripping out.

 

[markoana]

This is not anecdote. I am not kid, to play game "try to guess". I promised not to say who is person, that was his request. Sorry that i wrote it here, ADMIN can delete that message, maybe it was not correct that I wrote it. It was not sensationalism, or my wish to give optimism to other members.
It was friendly inside info that i wrote here, that I thought (and still think) was correct. Sorry again for writing that. Again, let Admins delete it, if it make confuse here.
tnx

 

[undecided]

I thought that "hospital staff" weren't even supposed to know if they're providing placebo or the real dope, let alone having inside knowledge from "test results" by the researchers.
I'm sorry, I'm calling bs on this, no offence to the person that originally posted it.

 

[Zug]

Guys, let me remind you that science works by testing also what NOT works. Even in the worst case scenario, the research community is learning better ways to help us. Let's not despair.

We'll know what happened soon enough.

 

[David Ho]

I've written asking for clarification so the e-mail is already on the person's inbox. Hopefully tomorrow morning I'll get an answer.

 

[Gill Hayes]

I think undecided makes a very good point - I find it hard to believe that a hospital employee is permitted to divulge what is essentially confidential, competitor sensitive information about a clinical trial drug before any official and substantiated communication has been released by the pharma company involved.
I'm not doubting the guy that posted for one minute, just the reliability of the source of the information. It might well be true but until I hear it straight from Autifony I will stay open minded on the matter. Let's see what the next few days brings.

 

[Hope2015]

Ok everyone, I use to panic easy and quickly but I think here it is not the case. I think they have no reason to stop the trials. Why would they? Drug isn't going to work? It was explained logical how this drug is going to work on potasium channels. If trobalt worked for some people and even cured some of them(I know only few because of the bad side effects people couldn't carry on), then Autifony which is doing the same thing but with less side effects I think it will work.
Just a question, if they are really going to stop the trials, I mean they are a big and respectable company, I think they would make this declaration public not telling this to a single person. Right?

 

[SoulStation]

I was already having a tough day. This is like the cherry on top of the shit sundae. Glad I didn't have the highest hopes for this drug- but lord knows I hope they sort it out . Every one please stay calm and don't do anything drastic.

 

[attheedgeofscience]

Okay... I have been following the developments about this as of yesterday evening (in a private group on Facebook). I refuse to get drawn into speculation, but, since I have the time this evening and since a member of mine commented on it, and since there appears to be two sources stating the same thing, I will share what little information I have at this point.

It was explained logical how this drug is going to work on potasium channels. If trobalt worked for some people and even cured some of them(I know only few because of the bad side effects people couldn't carry on), then Autifony which is doing the same thing but with less side effects I think it will work.

Not the same thing. Kv3.x and Kv7.x channels are expressed in different body tissues. There is nothing "logical" about the potassium channels in relation to tinnitus (in humans) - at least not until it has been tested in humans. Sorry!

See also this update:

www.tinnitustalk.com/threads/scifluor-receives-us-patent-for-kcnq2-3-activator-to-treat-epilepsy-and-neurological-disorders.7743/page-3#post-140664

Just a question, if they are really going to stop the trials, I mean they are a big and respectable company, I think they would make this declaration public not telling this to a single person. Right?

They are a respectable, but, not a big company. They are only just through series A financing, and, are still privately held. They are not restricted in the same way a publicly listed stock company has to operate (e.g. Auris Medical AG) incl. release of information.

I am not an expert in these types of specific matters (who is), but it is possible that the trial has been called off informally. I am basing this on the way the phase-II trial was introduced i.e. a two month delay - or something like that - with no structured communication about it (I was in contact with the CEO and also a researcher of the trial at the time). I can try to contact that researcher tomorrow (if no further information).

So today I have asked Mr. Charles Large (CEO) if he would kindly provide a statement. I have followed up with a separate request to Mr. Giuseppe Alvaro (also). No replies. I am not going to follow-up with any other members as the two mentioned ones are the only people who have the authority to speak on behalf of the company (probably). They are not part of my usual list of contacts, and hence, I do not have any feeling with what their usual response rate is. I can try to follow-up tomorrow with some of my common sources of information, but, it is unlikely that they can help in this particular matter (I think).

In addition, I can mention that results for the phase IIa trial are scheduled by end of year, 2015. It is perhaps (I don't know exactly) possible that they have early/initial assessment of the clinical trial data (or at least enough to draw a conclusion already now).

This is what I know.

attheedgeofscience
12/OCT/2015.

 

[Hope2015]

Thank you @attheedgeofscience for sharing further informations. In the same time, I am sure you know the stories with people who were cured of t with trobalt, an epilepsy drug which works on potasium channels, right? And other people who tried trobalt, they experienced an improvement but they couldn't carry on because of the bad side effects. Autifony seemed to do the same thing but with less side effects. What I know for sure is that Autifony represent a big hope for everyone with this affliction. I don't really know what is going on but I hope this things are not real. We really need this, right?
Hope you find out the truth, soon!

 

[attheedgeofscience]

Thank you @attheedgeofscience for sharing further informations. In the same time, I am sure you know the stories with people who were cured of t with trobalt, an epilepsy drug which works on potasium channels, right?

Yes. I was one of the co-authors of the first paper (ever) to be written on the efficacy of Trobalt in relation to improving the symptoms of tinnitus in humans. So yes, I know...

www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-petition-to-the-ata.6896/page-7#post-95890

 

[Blackbird26]

Well shit. I am with Silver..same age range..but I sincerely never put hopes into anything until it is verified by evidence such as trials completed and with bloody FACTS...

I don't count on a cure happening..however I hope one does..I only continue to worsen..but I am not afraid to die..so I guess I am ok in that if I only have roughly so many years left..maybe someone comes up with something. .although even "years" sounds long..anyways. Can't say I am surprised. .more surprised people were counting on it. (sorry) :******* God help us all..or whomever.

 

[DebInAustralia]

Can we just wait and see what unfolds? Lets try to be mindful of not escalating panic and fear by speculation.

 

[swc5150]

@attheedgeofscience
In the past I've corresponded with Dr. Large via email, and he can be slow to respond. Hopefully you hear back sooner than later.

Lots to learn before freaking out. 2 sites shutting down doesn't necessarily mean the entire trial is being canned. If it is, perhaps it's because of positive results, and they want to jump to phase 3 sooner? I'm sure Corrine would be surprised if there was no P3, since she's already been asked to partake. Stay positive until word comes down from the top

 

[Danny Boy]

@ateos
In the past I've corresponded with Dr. Large via email, and he can be slow to respond. Hopefully you hear back sooner than later.

Lots to learn before freaking out. 2 sites shutting down doesn't necessarily mean the entire trial is being canned. If it is, perhaps it's because of positive results, and they want to jump to phase 3 sooner? I'm sure Corrine would be surprised if there was no P3, since she's already been asked to partake. Stay positive until word comes down from the top

I'll call a few hospitals later today, mainly Bristol, as I live there. It's where Dr. Charles Large got his first degree and PHD. We'll see later today. Hopefully there's no substance to these rumours...As I'll feel so bad for you guys/gals.

 

[Markku]

I have received word from Autifony that they will be contacting me with more information ASAP.

Now stop the speculation in the midst, that helps nobody, pretty please

 

[Danny Boy]

I have received word from Autifony that they will be contacting me with more information ASAP.

Now stop the speculation in the midst, that helps nobody, pretty please

Hopefully it's good news...Although, it's strange the Bristol centre says it's not recruiting when they are quite new as a centre. I shall call later them later today.

 

[OnceUponaTime]

Speechless. At times I feel like I am on life sentence. :`( Then I am reminded that there is always hope...

 

[bellringer]

I haven't had my turn to speculate.

I am going to remain positive. According to the clincaltrial.gov web site, final data collection is going to take place in December 2015. The primary collection data is 28 days. If they are canceling screening appointments from this point on it would not be outside the realm that they are preparing to wrap up the trial as the primary data collection is ending in December. At some point every clinical trial has to end and it just so happens this one is nearing the published end date.

Now, for those of you talking suicide if this drug fails, pharmaceutical is not the only treatment option. Although it would be the best, there is notching, TRT, and Neuromonics therapy. I am going on 4.5 months now with my tinnitus, been on AM-101 with zero success, but I am looking forward to starting TRT in a few months. Everyone who has this affliction for a long time tells me it gets better and I believe them. The light at the end of the tunnel may have dimmed, but it hasn't extinguished.

 

[Sailboardman]

This whole episode, reminds me of the feeding frenzie, created by Drecul over CBD oil. Wait and see what the folks at Autifony say, before jumping out the window!

 

[SoulStation]

I hope no one does anything drastic. There's always DBS or HIFU. theres always trolbalt or SF00034