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

[amandine]

Exactly the same for me neither colour of pill or bottle are the same. May be I was also on the wrong trial, come to think of it my athletes foot condition has been looking a lot better

Thanks chamferman for letting us know and @Hotspur too thank you for the info.
Wonder if you can say what colour and shape the pills were and also the bottle please? Were yours the same as each other? Dont we need to establish that as well?

The other thing that no one has mentioned is that @Remington says that he got 28 pills in the bottle and mysteriously day 27 was his last day, plus I thought it was supposed to be four pills a day x 28? That is correct isnt it? FIrst four taken in hospital and last four taken in hospital which leaves 26 x 4 pills meaning 104 pills to fit into that tiny bottle we saw........
Can chamferman and @Hotspur come back on the above please or even @Remington explain........
thanks

 

[Tinnitus Talk]

Wonder if you can say what colour and shape the pills were and also the bottle please? Were yours the same as each other? Dont we need to establish that as well?

We recommend that this is not divulged in the open.

This is one of many ways the staff of Tinnitus Talk can use to weed out people who really aren't in the trial.

Some details may be best kept secret. Overall, the colour and shape of the pills are irrelevant details for the general public.

Would you agree?

 

[amandine]

We recommend that this is not divulged in the open.

This is one of many ways the staff of Tinnitus Talk can use to weed out people who really aren't in the trial.

Some details may be best kept secret. And the colour and shape of the pills are irrelevant details for the general public.

Ok this is really fair enough!
Presumably both @chamferman and @Hotspur have let Markku know confidentially and separately what their pills and container bottle were like in order to compare to each other and to @Remington ? Therefore can markku confirm publicly please a match to each other and not to remington please? without giving any other info publicly to protect that information.
Thanks....

 

[attheedgeofscience]

Therefore can markku confirm publicly please a match to each other and not to remington please? without giving any other info publicly to protect that information.

In response to some members concerns, the staff of Tinnitus Talk have determined that there seem to be some anomalies about Remington's account and his story about being a participant of the Autifony trial.

 

[RCP1]

Crazy development. I must admit I never thought anyone would have had the motivation to sabbotage a thread of this nature. People never seem to amaze me. This time in a very negative sense.

 

[jeannie]

How could someone not know what trial they are on? Really.????? This is a very serious thread for most of? Us!!

 

[Rube]

How could someone not know what trial they are on? Really.????? This is a very serious thread for most of? Us!!

I think @Hotspur and @chamferman were joking around. I believe they may have already confirmed with t talk staff that they were actually on the trial.

 

[Hotspur]

How could someone not know what trial they are on? Really.????? This is a very serious thread for most of? Us!!

I find jokes don,nt work very well when you have to explain it was a joke,but it was indeed a joke,maybe lost in translation

 

[RCP1]

Don't worry man - 99% of folk knew you were joking

 

[Robb]

Yeah obviously it was a joke, else no one is going to comply so quick in posting a fake bottle of multivitamins where label is ripped of.

Please someone put an efford in putting some summary of vital information of what have been achieved. As I do feel the drug has potential but is to weak, could be stronger dosed and slighly more targeted. Where is useful evidence?
Find it, document it and keep posting it here plz..

 

[Hotspur]

Hi Robb,i do agree with you,but for a definitve answer someone needs to take this and experience silence

We can say 2,3,4 whatever ,its all different for everyone,the only guideline i think i could go by would be the hearing test ,where i got a good result last week,and will be re tested again in a couple of weeks

 

[Christian78]

I am also on Aut63 trial, but i decide not to show my pill box because doc told me to hide it. And he sait also results will be in summer so there is no need i report, BUT if you want, i can find my old account i had before registered here by mistake and play.

it is cruel what people do just for a bit attention, why do we who suffer from same terrible decease make fools of one another, what is point in saying i am on trials if it is not truth? I am stupid i just dont understand it.

 

[RichL]

I am stupid i just dont understand it.

Your not stupid, It's just an unfortunate trait of some human beings to not have any empathy for other's suffering.

I don't understand it either!

 

[Robb]

Hi Robb,i do agree with you,but for a definitve answer someone needs to take this and experience silence

We can say 2,3,4 whatever ,its all different for everyone,the only guideline i think i could go by would be the hearing test ,where i got a good result last week,and will be re tested again in a couple of weeks

Hi Hotspur once more thanks so much for your quick reply. Please tag me in any of your next posts.
If i am right the drug gave you a mild improvement in your T? But probably gave a better result in recovering some of your hearing loss?
Good weekend plus Best Robb

 

[Hotspur]

Hi Hotspur once more thanks so much for your quick reply. Please tag me in any of your next posts.
If i am right the drug gave you a mild improvement in your T? But probably gave a better result in recovering some of your hearing loss?
Good weekend plus Best Robb

Hi Robb your correct ,thats spot on

 

[amandine]

If i am right the drug gave you a mild improvement in your T? But probably gave a better result in recovering some of your hearing loss?

Hi - just a bit confused by this due to the answer given in the autifony q+a on TT here
A. No, we do not expect AUT00063 to improve the pure tone audiograms as the drug will not restore the damaged hair cells in the ear. However, "063" is aimed at improving auditory processing in the brain, a very important aspect of age related hearing loss, so hopefully could help with understanding speech against a background of noise (particularly in a reverberant environment).

I am missing something for sure - please explain - not improvement in hearing loss except for hearing against background noise.......is this what you mean Hotspur....sorry for being a bit dumb and not understanding the difference here but if you had an improvement in hearing test then this is in contradiction to what autifony thinks will happen? sorry for not understanding.......

 

[Hotspur]

I am also on Aut63 trial, but i decide not to show my pill box because doc told me to hide it. And he sait also results will be in summer so there is no need i report, BUT if you want, i can find my old account i had before registered here by mistake and play.

it is cruel what people do just for a bit attention, why do we who suffer from same terrible decease make fools of one another, what is point in saying i am on trials if it is not truth? I am stupid i just dont understand it.

Sorry,i thought this was only open to patiants on the NHS?

 

[Hotspur]

Hi - just a bit confused by this due to the answer given in the autifony q+a on TT here
A. No, we do not expect AUT00063 to improve the pure tone audiograms as the drug will not restore the damaged hair cells in the ear. However, "063" is aimed at improving auditory processing in the brain, a very important aspect of age related hearing loss, so hopefully could help with understanding speech against a background of noise (particularly in a reverberant environment).

I am missing something for sure - please explain - not improvement in hearing loss except for hearing against background noise.......is this what you mean Hotspur....sorry for being a bit dumb and not understanding the difference here but if you had an improvement in hearing test then this is in contradiction to what autifony thinks will happen? sorry for not understanding.......

Hi amandine,the frequencys between 6000khz and 8000khz i showed an improvement of roughly 20db

 

[RichL]

Hi amandine,the frequencys between 6000khz and 8000khz i showed an improvement of roughly 20db

If that was the real drug that @Hotspur was on, then a 20db increase in those frequency's would, more than likely, be due to improved auditory processing that this drug is targeting @amandine .

 

[amandine]

Sorry,i thought this was only open to patiants on the NHS?

Sorry but he's having a laugh! Just sometimes doesnt come over in print...........and foreign english LOL but he was just taking the proverbial.............and trying to make us all lighten up and have a giggle.

So that is great news anyway, your hearing is better by loads and your T must be much improved! Fantastic. Also autifony are now saying up to 20db loss across the various Hz for hearing loss which is basically no hearing loss........so they seem to have taken that bit out.......I am so pleased for you Hotspur and you must be feeling pretty chuffed too! And no bad side effects like many get on trobalt...brilliant!

 

[earsnothappy]

It would be great if there was a thread that only trial participants posted in and stated their progress.

 

[Mark662]

It would be great if there was a thread that only trial participants posted in and stated their progress.

Good idea, even better if there were more trial participants reporting here than the few at this present time.

 

[rtwombly]

Hi amandine,the frequencys between 6000khz and 8000khz i showed an improvement of roughly 20db

That's pretty suggestive that there is something that is working for you, just maybe it needs a longer exposure to make definitive change to your tinnitus. The first thing we Retigabine testers noticed was a "cleaning up" of tones. My high pitched sounds went down considerably more than my low pitched sounds. Maybe all that's needed here is more time.

 

[rainman]

It would be great if there was a thread that only trial participants posted in and stated their progress.

Indeed, like ATEOS stem cell experiment thread. Was very joyable to read without all the offtopic conversations and other time consuming "tweets". And other, bigger thread was Q and A. Ingenious!

 

[Tinnitus Talk]

The experiences thread has now been created.

https://www.tinnitustalk.com/threads/autifony-phase-ii-trial-participants-experiences.8339/

Only participants of the trial should post their experiences in the experiences thread.

All other posts — including comments on the posted experiences — will still belong to this thread you are now reading.

• Trial participants can post to both threads:
  Autifony Phase II Trial Participants Experiences
  Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus
• Those not in the trial can only post to this thread:
  Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

 

[Zimichael]

Autifony Trial Requirement Changed???

Sorry if this has been said already, but I was doing a search on other related AUT00063 stuff and the USA version of the trial, and started going: "Huh??? Where's all that hearing thresholds exclusion junk that drove us nuts way back at the initial announcement, etc.???"
Maybe I have suffered irreparable idiocy since Trobalt but I can't see it c/o Autifony's own referral, or the WHO record of the trial, or the USA version, or anywhere. Was I dreaming???

Here's a couple of links:

http://www.ukctg.nihr.ac.uk/trialdetails/NCT02315508

https://clinicaltrials.gov/ct2/show/NCT02315508?term=tinnitus&rank=85​

Perhaps some of those initial "rejectees" should re-apply???

Best, Zimichael

 

[Markku]

Maybe I have suffered irreparable idiocy since Trobalt but I can't see it c/o Autifony's own referral, or the WHO record of the trial, or the USA version, or anywhere. Was I dreaming???

https://www.tinnitustalk.com/threads/autifony-q-a.8331/

The above thread's FAQ contains the latest information, quoting:

Q. Can I enter the study with normal hearing?
A. The study requires subjects to have a small (>20dB) hearing loss at one or more frequencies from 0.5kHz up to 8kHz; this is a minimal loss and most tinnitus sufferers will have this.

 

[Zimichael]

https://www.tinnitustalk.com/threads/autifony-q-a.8331/

The above thread's FAQ contains the latest information, quoting:

Q. Can I enter the study with normal hearing?
A. The study requires subjects to have a small (>20dB) hearing loss at one or more frequencies from 0.5kHz up to 8kHz; this is a minimal loss and most tinnitus sufferers will have this.

Yeah Markku, but is it still for real??? It used to be smack up, clearly posted on those trials requirements sites! Also I have info detailing that Autifony was/is having some trouble filling the slots (Duh! as with those restrictions = yeah!).

Best, Zimichael

 

[amandine]

Yeah Markku, but is it still for real??? It used to be smack up, clearly posted on those trials requirements sites! Also I have info detailing that Autifony was/is having some trouble filling the slots (Duh! as with those restrictions = yeah!).

Hey Zimichael, How are you?
I think that these are the new criteria - probably due to the fact that they were not filling the places. This is how it looks to me due to their recent q+a and they did say that they would be reviewing the criteria in March so maybe this time they have acted early.......

 

[2131e]

Hi all,

Just wanted to give you guys an update on my experience on the Autifony trial. I went through screening today and failed (passed?) the hearing test. Across frequencies I only have a hearing loss of 6db.

The good news (well maybe for some of you) is that the Prof running the study tells me that in 4 to 6 weeks a new Autifony trial will begin. In this trial, they will include you if there is just one frequency of yours (in the normal speaking range frequencies) that is worse than 20db (I don't know about the limit at the other end of the spectrum). So perhaps some people might want to try get on that. I don't have more details about it.

Also the Prof seemed totally annoyed by the hearing loss requirement and said he's going to raise this as a problem again, as it keeps meaning people keen to do the trial get excluded.

Finally, he also said that if I was still having trouble with my T in a year, to get my GP to contact him and if the drug has made it far enough through the pipeline he might be able to give me some of it ('no promises', he says). So if the drug works, there's a chance for some possible relief in the medium term.

Hope some others are successful getting on the trial.