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

#3,151
zoid said:
Wow, I almost can't believe the trial is stopping because the drug isn't working, however everything points in this direction. At the moment I am on Trobalt and a higher dose really silences my T. The first time on a higher dose of Trobalt I was 100% sure AUT00063 also was going to work because it was more targeted to the auditory potassium channels. It gave me some hope. When reading this news I was quite disappointed.

Hope there is better news but at this time I'm afraid there isn't.
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It seems as if the K target of AUT00063 was the wrong target.
 
#3,154
I don't think trying it for 28 days on only 58 highly selected people is at all adequate. there are thousands who could have at least tried it if there are no safety issues.
I know a person on gabapentin, an epilepsy drug her T has now gone right down.
Why wont the drug companies listen to the stories of keppra helping H.
I hope they try again some other way.
Maybe if it works for hearing loss in the US we can get it if we have hearing loss caused T.
 
#3,155
attheedgeofscience said:
  • 2k ratings on Facebook
  • 5k reads on Researchgate
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I hope you know that I have the greatest respect for the work that you do. Since there has been quite some criticism of people not 'liking' posts on facebook I would like to briefly point out that not everyone wishes to have an account with that company. I made a decision several years ago that I did not wish to because of the privacy concerns that were around at the time, and which only seem to have got worse (I'd suggest to google it, but the irony would be too much!). Anyway, I apologise if I am holding back progress, although I am a little uncomfortable with any implicit assumption that everybody has now signed up and communicates through those channels.

I have downloaded the article and will see whether I can make any sense of it. :)
 
#3,156
Zechariah said:
Yes, it is easy to understand why people thought what they thought. Especially the people who like to use verbs like "hope" and "believe" when they discuss about scientific matters. Don't get me wrong but your message is a good example why people got so hyped (wishful thinking, false conclusions etc.)

I couldn't agree more with ATEOS:

"I cannot even begin to express my dissatisfaction with the incredible amount of clinical misinformation that floats around on a forum such as TinnitusTalk. Lots of arm-chair critics, wannabe experts, and self-proclaimed heroes who want to share their infinite wisdom of tinnitus."

But anyway, AUT00063 failing wasn't a big hit for me personally. I've been betting my chips on AM-101 which actually has some proven positive results - Although I've been told that my thoughts about "ear tinnitus" are so 90's and not valid anymore. My mild results with Trobalt actually suggests that my T could be still "an ear thing" but this may be a false assumption :(

And btw @attheedgeofscience and @marqualler , I assume that you have figured this out already but what comes to peoples activity to spread knowledge and push the like button in facebook - I assume they don't because it isn't going to help them personally (or atleast not right now). I guess it's the same shortsighted and self centered thing with voting - "My vote doesn't matter or change my life to better".
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I don't much but I believe T, mine anyway is ear driven. Mine goes down when I give it peace and quiet and up when I subject it to noise. seems to me my ear has a big part the play in my problem.
Years ago I was told that noise made the ear drum vibrate thus making the tinnitus sound after a concert, was that right or wrong.
Is there any way all the members can get a petition to try and get more companies to try after all there is so much money to be made out of us.
 
#3,157
erik said:
It seems as if the K target of AUT00063 was the wrong target.
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I think the same. See my post above.
SF0034 targets KV 7.2 and 7.3, AUT00063 KV 3.1
Retigabine KV 7.2-7.5. So maybe Autifony will look into something similar to Retigabine/SF0034.
Of course some wishful thinking in this.
 
#3,159
@marqualler I see your point. Using your own story, you weren't ready to share with your family and friends for 1 year. I'm not there yet. People come to this forum from all walks of life, literally all over the world. Different cultures, different situation. I can talk about myself, Tinnitus is new to me, only my immediate family knows about it, and I don't know if I want to share with all my followers and professional contacts. It doesn't mean I don't want to help. I fact, one of the first things I did when I decided to get on my feet and start living after the initial shock of waking with T was making an anonymous donation to ATA. I don't know if it's the best use of my money and I know for sure that money doesn't solve all problems, I'm just pointing out that as there are different people and cases of Tinnitus, there may be more than one way of helping.

@attheedgeofscience , you asked what would be so "dangerous". I wouldn't phrase it like that, but I'd like to remind you that in this forum there are people from different cultures. In my own corner in the world I know there would be ramifications. I live in a culture very different from Europe. Personally when I start posting things about a decease, I know I will start getting calls and messages, and I'm not ready for that. Professionally, I have a big following, and due to my line of work it would impact my career. People may disclose their health situations for a lot of reasons, and I still want to keep mine private. I can see the thinking on "let's share an article that may be important", but different people can contribute in different ways.

Guys, I'm as heartbroken about this news as anyone else, I'm also a little pissed that Big Pharma doesn't seem to look at Tinnitus at all and all we got are some small companies to keep our hope up. There must be ways to draw more attention from the companies, and help the research community as Team Trobalt have been doing. Let's not give up.
 
#3,160
erik said:
It seems as if the K target of AUT00063 was the wrong target.
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Yeah; that's too bad -- Trobalt seems to "work" for me, but at the expense of rekindling long-dormant problems with chronic pelvic pain (my guess is that my muscles in that area are sort of fucked up and on a hair trigger, and so the smooth muscle action that RTG exerts against the bladder muscles send the whole region into chaos).

So, I was hoping that it'd be possible to differentiate between the receptors triggering T, and the receptors triggering the muscle issues -- and AUT00063 seemed like an attempt to do exactly that. On the other hand, it may be that for my body, there is no way to suppress T through Kv channels without creating the other problems -- in which case, I suppose I just keep living with the T, because even though it's sub-optimal, the constant noise is not so big a deal compared to being in constant pain and discomfort that makes it hard to do things like walk or sit with any comfort at all.
 
#3,162
Don't lose faith. I don't see Autifony throwing in the towel yet. I'm sure they were prepared for a tweak in the protocol. I'd rather they stop the trial early, rather than dragging it out if they weren't seeing the results they wanted. With that, the next trial can start sooner. The low dosage in a short time-frame (28 days) probably made sense for initial run. I just don't believe they'll take any left over funding cash and skip town. There's way more profit in treating T. Plus, I doubt enough T sufferers turn to hearing aids, to make that industry pay them off to shut down their research. Maybe it's just that I'm not a conspiracy theory type of guy, but I refuse to believe they'll just give up now.
 
#3,163
Zug said:
People may disclose their health situations for a lot of reasons, and I still want to keep mine private. I can see the thinking on "let's share an article that may be important", but different people can contribute in different ways.
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I totally agree. I find the whole tone in this thread lately of "this stuff isn't working because you guys aren't sharing things on facebook enough" to be incredibly condescending and grounded in an infantile understanding of the world. The problem is not that people with tinnitus are not vocal enough about this issue on the internet. Sharing a facebook article a million times doesn't actually change the world. Quit drinking the kool-aid. Hard problems are hard.

Guys, I'm as heartbroken about this news as anyone else, I'm also a little pissed that Big Pharma doesn't seem to look at Tinnitus at all and all we got are some small companies to keep our hope up. There must be ways to draw more attention from the companies, and help the research community as Team Trobalt have been doing. Let's not give up.
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Autifony is 25% owned by GSK. Big Pharma is watching the issue. Drug R&D is focused on relatively short term dividends, just like everything else.
 
#3,164
linearb said:
The problem is not that people with tinnitus are not vocal enough about this issue on the internet. Sharing a facebook article a million times doesn't actually change the world. Quit drinking the kool-aid. Hard problems are hard.
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You have to look at it through the prism of which possibilities are available to a community. In the case of TinnitusTalk, the only real resource/power available is that of the mass volume of members/visitors. Forget about donations; forget about commitment to do advocacy work; forget about research.

And so, with those considerations in mente, there is pretty much only one option left.

"The truth isn't always pretty."
--attheedgeofscience
 
#3,165
linearb said:
I totally agree. I find the whole tone in this thread lately of "this stuff isn't working because you guys aren't sharing things on facebook enough" to be incredibly condescending and grounded in an infantile understanding of the world. The problem is not that people with tinnitus are not vocal enough about this issue on the internet. Sharing a facebook article a million times doesn't actually change the world. Quit drinking the kool-aid. Hard problems are hard.
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I don't think anybody is saying that hard problems aren't hard--in fact that I think is in essence what I was also trying to say. And nobody is suggesting that simply sharing facebook statuses would change the world. But it is indicative of the type of action that we need to have and symbolic of a lack of action. I certainly hope I didn't come off condescending in my message because that certainly isn't the intent.

I get that it's hard to share your own personal health story to the greater world--it took me a year to really "come out" to the general public with tinnitus. But I'm convinced that until the greater world sees tinnitus as the major problem that it is, progress will continue at the pace it is continuing at.
 
#3,166
The only effective treatment I have ever found for tinnitus is meditation. A special kind. I lie on my right side on the sofa between 6:30 am and 7:00 am. More often than not, the tinnitus will start to ease. At the very moment this is happening, I open my eyes to check and see if it stays away. If not, I proceed to meditate again. Once I get it quieted, I must get up immediately. If I start basking in the quiet and fall asleep, it will attack with a vengeance and be with me all day. The meditation does not work at any other time of the day. It must be the plasticity of the mind. I have had tinnitus for eight years and have only come upon this "treatment" in the last year. I never know if it will work or not but when it does, life is beautiful.
 
#3,168
linearb said:
I totally agree. I find the whole tone in this thread lately of "this stuff isn't working because you guys aren't sharing things on facebook enough" to be incredibly condescending and grounded in an infantile understanding of the world.
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Perhaps it was the same infantile understanding of the world that led to a sponsorship with Auris Medical AG (the leading otology pharma in the world):

www.tinnitustalk.com/threads/auris-medical-the-first-corporate-sponsor-of-tinnitus-talk.11325/#post-139169

There are way many more "things" going on in the world of tinnitus and research than you - and others - are necessarily aware of. Because in order to be aware of these things, you have to be part of the inner circle and behind-the-scenes initiatives. Something to think about.

attheedgeofscience
13/OCT/2015.
 
#3,169
Well I'm dissapointed that they ended the trial after only 58 participants trailed the drug and from what I understand they didn't experiment with longer durations and higher doses, so that doesn't really seem like enough to give up on it. Now I guess we wait to see if the SF drug comes to market as I don't think they will be testing it for Tinnitus as its a secondary outcome of the epilepsy drug, so that means a long wait.

But you know what they say;
Hope for the best but prepare for the worst.
I truly hope everyone on here can accept this news and stay strong until we have some relief.
Best wishes to all
 
#3,170
I think we are all disappointed (understatement, of course) about the news from Autifony. I don't think it is helpful to turn that frustration into an argument about whose fault it is. It isn't anybody's fault - or nobody here as far as I am aware.

I really appreciate the efforts of all here, staff, Team Trobalt, ATEOS, etc., but I honestly don't understand the big deal about 'liking' something on a social media platform that not everyone is part of. Sure, you could say it is 'symbolic' of a lack of action. But I think people feel pretty rubbish already today, and trying to shame them is not a useful way to help with that. Just my perspective, and as always I mean no offence.
 
#3,171
preslys said:
I'm sorry for this failure, that makes me hurt, believe me when I took my first dose of Trobalt I thought that autifony will succeed, especially that night of October 7 th 2015 when I woke up at 2:00 'I heard only absolute silence in my room.but it does not matter there's other treatment that are coming in the near future .don't lost hope it's not the end of the world. I have to thank @Markku for his great support and all his team also @attheedgeofscience for his efforts and others @Zimichael @nills @Viking @lapidus @amandine ...

And also my friends on "France acouphene" let me say them in french "merci beaucoup mes amis je vous souhait une totale guérison".
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I am happy for you
don't leave this forum stay and give us some update of you ;)
 
#3,173
Zug said:
Personally when I start posting things about a decease, I know I will start getting calls and messages, and I'm not ready for that.
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Question... if you click on the "like" button for breast cancer awareness...

upload_2015-10-13_17-40-11.png


...does that mean you have breast cancer?

Notice that the page above has 4 million ratings, as well...

Listen... I am not here to try to convince anybody to do anything. I started logging on to TinnitusTalk a little while back as I am conducting a bit of research with volunteers. Then this (Autifony trial termination) happened - I got word of it already Saturday evening. And so, given my knowledge and background connections, I decided to weigh in on the matter and share my expertise during the development. I certainly have no plans of staying around - especially not if there is no support from the community. That's clear.

attheedgeofscience
13/OCT/2015.
 
#3,176
dboy said:
Maybe what we need is to all get together in a big room with a bunch of pillows and have a big pillow fight until we all feel better. ;)
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Or... maybe we should all start reading the TRT thread a little more. Especially the posts by @Dr. Nagler - it's going to be a while before relief is on its way.

I suspect TRT appointments will be doubling in the next coming weeks, haha.

In the absence of better alternatives, may I draw you all to the following favourite post of mine (all time classic):
Dr. Nagler said:
This really all comes down to how you want to live your life. Is tinnitus going to drive your bus, or are you going to drive your bus and tell tinnitus to get the hell off at the next stop!!
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Just tell tinnitus to get off at the next stop. Problem solved.
 
#3,177
Sam U said:
What is the SF drug? How does it work and what stage is it in.
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The SF drug is a chemically modified version of retigabine, an epileptic drug that has been found to reduce T in some users on this site. Retigabine has some very nasty side effects though and that makes it hard to get as many countries do not approve of it anymore. SF is modified by adding a fluorine molecule that is supposed to make it target more specifically, thus in theory lowering side effects and improving efficacy. It hasn't reached any sort of trial yet, and may only be trailed for epilepsy rather than tinnitus as well, but they do mention tinnitus in all the news postings about it. It's still a long ways off
 
#3,178
@attheedgeofscience @Markku and all that are helping push our cause, Thank you, from the bottom of my heart. I was one that did not wanted anybody on my facebook to know that I have T... but I have come to realize that that will not help me..us. WE need to start telling the WORLD about T and how it affects our lives daily. I did advertising and Public Relations for years... it works. It changes perceptions, opinions, mind sets, habits...views, hearts. Don't despair, there will be a cure for T. Even if not in our lifetime, but for our children and grandchildren. And that a lone is worth fighting for NOW.
 
#3,179
dboy said:
I really appreciate the efforts of all here, staff, Team Trobalt, ATEOS, etc., but I honestly don't understand the big deal about 'liking' something on a social media platform that not everyone is part of. Sure, you could say it is 'symbolic' of a lack of action.
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It's not about symbolism. I was never one to make statements for the sake of making statements. Behind every success of Team Trobalt, there have been +5 failures. Doing advocacy work is hard and tiresome. And only the successes come to the surface. It's all about practical stuff. Never symbolic acts.

If "attention" (or awareness) of tinnitus cannot be made via the academic circles, then really only the social media side is left. That's the rationale.

dboy said:
But I think people feel pretty rubbish already today, and trying to shame them is not a useful way to help with that.
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Perhaps. But it's also a matter of timing. This thread has been read some 3-4000 times in the past 48 hours. A real opportunity to draw "attention" to the things that matter.
 

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