MemberKnowing how behind medical system here is I doubt we will see it, at least not amongst the first
Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus
- Thread starter attheedgeofscience
- Start date
Knowing how behind medical system here is I doubt we will see it, at least not amongst the first
It's ok! I'm sure within 10 years we'll get close enough to an actual cure. Never say never.
OMG did I just see the word "multinational"? Yes please!
Thanks for sharing that Shantelle.
Hello. I'm from Brazil and would like to know more about the autifony medicine because I could not see anywhere good expectations about it. Why you are so hopeful? Sorry for the English. I'm using google translator.
Because the science is sound and logical. The man behind it, is esteemed in his field.
Charles H. Large, PhD
(Chief Executive Officer)
Charles Large received his first degree and PhD from the University of Bristol and has more than 20 years of experience of drug discovery and development in the pharmaceutical industry. Before founding Autifony, he was Director of Molecular and Cellular Biology within the Neuroscience Centre of Excellence for Drug Discovery at GlaxoSmithKline, and has worked on programs focused on schizophrenia, Alzheimer's disease, epilepsy, bipolar disorder, and major depression. He is an expert on drugs that modulate voltage gated ion channels and their application to neurological and psychiatric disorders. He has built up a reputation in the field of sodium channel blocking drugs, and has collaborated widely with academic groups. He has authored over 50 papers, book chapters and patents relating to ion channel modulators.
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Hi AUT00063 folks...
I have been "off board" for...I can't remember, but quite long time. Without going into detail, I have been "trashed" for months and too weak to be my old active TT self. However, I have a bit of info for this thread and a request please if I may. (Pay-back for past good behaviour I hope!?)
1. Could someone save me the time and energy of going back to where I left off months ago, and give me a summary of what the "conclusions" were on the UK tinnitus trial for AUT00063??? Last I was on this we were still trying to see if the one or two 'members' doing the trial were real...as there was a fake poster claiming to be on the trial, etc., etc., etc.
So, in summary:
- Did we have any legit TT members who figure got the drug?
- Was there any conclusion about "effectiveness"? (Last I was around there was: "Oh shit, this stuff is useless!" thoughts and a mood of disappointment).
OK, that's it on the save-me-tons-of-work favour...as my energy is still super low. Thanks anyone!
2. AUT00063 in the USA right now...the Clarity-1 Trial for age related hearing loss.
I applied many months ago as fall into the inclusion criteria (am 65 in a few months). However, the nearest site was an air flight away (Portland) and a hassle, until a new one just opened up at an ENT's practice in Sacramento, CA. I contacted Autifony, who contacted them, and I got a response immediately. *[Portland has been asleep at the wheel and still not recruiting yet!]. I had a long chat with a super fellow at that Sacramento ENT's office who is totally into "informed people" in trials like this...so we got on like house on fire. Obviously I asked for more detailed exclusion data to save me a 6 hour round trip drive, as I have tinnitus & hyperacusis and wondered if that was a factor. I got more than enough info...including that the TFI index is integral to the screening (Tinnitus Functional Index - attached). There is no way I can 'hide' the fact that I have T and H as I go everywhere in 'public' with plugs in for protection, until I know if it's "safe" (like that a doc is not a loud talker if I'm waiting in a small examining room; or if a quiet seeming store has loud PA system; etc., etc.).
OK so the trial guy tells me of another applicant who looked super (like me) but was screened out because he scored above 24 on the TFI...That is their threshold level! Twenty four.
So I said: "Look to save us both time let me do the test right now and I will call you back in a few".
Which I did...and scored 31 on the index once "scored" correctly (use the instructions as it is not just a straight addition game). Now, let's be clear here...I scored myself near zero for all the plethora of questions of my T 'affecting' my personal condition within myself. Like ability to think, to sleep, to concentrate and all that stuff. As in general, even though I have incredibly loud central T "EEEEeeeeeeeeeeeeeeeeeee" at all times, I have "adapted" to that pretty well. As I have said before many times (and just for the record this was 'my description' originally, not "You Know Who's")..."my tinnitus is my silence". Hell, after 59 years at same tone, (but 4 volume increases) that can be expected. It's the SRT (sound-reactive-T) and H that is my killer. And that hits squarely at the "quality of life" questions, 19.-22.
"Boom!"...if I was honest, those would all peg at the 9-10 level...Like "completely destroys my social activities, relationships, enjoyment of life, etc." What relationships???!!! People don't like being on alert all the time if I have plugs out, it's boring for them...Oh forget it. I have an axe to grind on the complete lack of understanding most folks have for "invisible illnesses/suffering".
So, that disqualified me for the "Clarity-1" trial right there. Let alone I could easily put some 1's and 2's in some of the other TFI questions of course.
Hence, be fore-warned if trying to get into the trial (older USA folks) and get an end run at your T via hearing loss. It also requires 6 on-site visits; lots of other testing; fair amount of time - if you live far away!
To end off (yeah I still write long posts I guess!), this very helpful gent did say that he "privately", thought that Autifony was going to do a "matching" Tinnitus trial for AUT00063 in the USA maybe fairly soon. Though had no concrete proof of that. He also said working with the VA (our hopes in Team Trobalt of using war vets to push for this, etc.) was like working with a third world banana republic, and were "super inefficient". My word would be: "Useless" = poor vets, poor us...re a 'power lobby'.
Enough for a first post in months... Remember the "favour" at top please someone!!! Thanks again...
Zimichael
I have been "off board" for...I can't remember, but quite long time. Without going into detail, I have been "trashed" for months and too weak to be my old active TT self. However, I have a bit of info for this thread and a request please if I may. (Pay-back for past good behaviour I hope!?)
1. Could someone save me the time and energy of going back to where I left off months ago, and give me a summary of what the "conclusions" were on the UK tinnitus trial for AUT00063??? Last I was on this we were still trying to see if the one or two 'members' doing the trial were real...as there was a fake poster claiming to be on the trial, etc., etc., etc.
So, in summary:
- Did we have any legit TT members who figure got the drug?
- Was there any conclusion about "effectiveness"? (Last I was around there was: "Oh shit, this stuff is useless!" thoughts and a mood of disappointment).
OK, that's it on the save-me-tons-of-work favour...as my energy is still super low. Thanks anyone!
2. AUT00063 in the USA right now...the Clarity-1 Trial for age related hearing loss.
I applied many months ago as fall into the inclusion criteria (am 65 in a few months). However, the nearest site was an air flight away (Portland) and a hassle, until a new one just opened up at an ENT's practice in Sacramento, CA. I contacted Autifony, who contacted them, and I got a response immediately. *[Portland has been asleep at the wheel and still not recruiting yet!]. I had a long chat with a super fellow at that Sacramento ENT's office who is totally into "informed people" in trials like this...so we got on like house on fire. Obviously I asked for more detailed exclusion data to save me a 6 hour round trip drive, as I have tinnitus & hyperacusis and wondered if that was a factor. I got more than enough info...including that the TFI index is integral to the screening (Tinnitus Functional Index - attached). There is no way I can 'hide' the fact that I have T and H as I go everywhere in 'public' with plugs in for protection, until I know if it's "safe" (like that a doc is not a loud talker if I'm waiting in a small examining room; or if a quiet seeming store has loud PA system; etc., etc.).
OK so the trial guy tells me of another applicant who looked super (like me) but was screened out because he scored above 24 on the TFI...That is their threshold level! Twenty four.
So I said: "Look to save us both time let me do the test right now and I will call you back in a few".
Which I did...and scored 31 on the index once "scored" correctly (use the instructions as it is not just a straight addition game). Now, let's be clear here...I scored myself near zero for all the plethora of questions of my T 'affecting' my personal condition within myself. Like ability to think, to sleep, to concentrate and all that stuff. As in general, even though I have incredibly loud central T "EEEEeeeeeeeeeeeeeeeeeee" at all times, I have "adapted" to that pretty well. As I have said before many times (and just for the record this was 'my description' originally, not "You Know Who's")..."my tinnitus is my silence". Hell, after 59 years at same tone, (but 4 volume increases) that can be expected. It's the SRT (sound-reactive-T) and H that is my killer. And that hits squarely at the "quality of life" questions, 19.-22.
"Boom!"...if I was honest, those would all peg at the 9-10 level...Like "completely destroys my social activities, relationships, enjoyment of life, etc." What relationships???!!! People don't like being on alert all the time if I have plugs out, it's boring for them...Oh forget it. I have an axe to grind on the complete lack of understanding most folks have for "invisible illnesses/suffering".
So, that disqualified me for the "Clarity-1" trial right there. Let alone I could easily put some 1's and 2's in some of the other TFI questions of course.
Hence, be fore-warned if trying to get into the trial (older USA folks) and get an end run at your T via hearing loss. It also requires 6 on-site visits; lots of other testing; fair amount of time - if you live far away!
To end off (yeah I still write long posts I guess!), this very helpful gent did say that he "privately", thought that Autifony was going to do a "matching" Tinnitus trial for AUT00063 in the USA maybe fairly soon. Though had no concrete proof of that. He also said working with the VA (our hopes in Team Trobalt of using war vets to push for this, etc.) was like working with a third world banana republic, and were "super inefficient". My word would be: "Useless" = poor vets, poor us...re a 'power lobby'.
Enough for a first post in months... Remember the "favour" at top please someone!!! Thanks again...
Zimichael
@Zimichael
One person posted onfb that she was on trial and had 50% or more improvement in T volume for full duration of trial and 3 weeks after but it came back to her. She had "kiss of deaf" induced tinnitus (so probably acoustic trauma category?). General consensus is that some people still dont believe in autifony but there are some research papers on epilepsy drugs that target kv channels like trobalt/autifony and they claim too it could provide relief for us so overall I would say we are as close to actual med to lower volume as ever. Sadly no resulsts posted yet by autifony - they are still concluding trials
One person posted onfb that she was on trial and had 50% or more improvement in T volume for full duration of trial and 3 weeks after but it came back to her. She had "kiss of deaf" induced tinnitus (so probably acoustic trauma category?). General consensus is that some people still dont believe in autifony but there are some research papers on epilepsy drugs that target kv channels like trobalt/autifony and they claim too it could provide relief for us so overall I would say we are as close to actual med to lower volume as ever. Sadly no resulsts posted yet by autifony - they are still concluding trials
More precisely, she said she had 75% improvement and it was wonderful while it lasted. She is now waiting to participate in phase 3.@Zimichael
One person posted onfb that she was on trial and had 50% or more improvement in T volume for full duration of trial and 3 weeks after but it came back to her. She had "kiss of deaf" induced tinnitus (so probably acoustic trauma category?). General consensus is that some people still dont believe in autifony but there are some research papers on epilepsy drugs that target kv channels like trobalt/autifony and they claim too it could provide relief for us so overall I would say we are as close to actual med to lower volume as ever. Sadly no resulsts posted yet by autifony - they are still concluding trials
A poster claimed a 75% reduction in her tinnitus volume, which was induced by a kiss on the ear type of trauma.
Tinnitus came back to baseline shortly after stopping the trial.
Her post can be found here : https://www.tinnitustalk.com/thread...he-autifony-quiet-1-study-great-results.9743/
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Thanks for the replies... Well "shoot", not exactly thrilling is it, compared to what we all were hoping.
@Xorthian ...yep, I know all about Trobalt. I was in on it from the beginning and was a trialee myself. Increased my H though. You can see in User Reports if interested as reached my own intended dose goal of 600 mg/day/total.
OK...all for now. Best, Zimichael
@Xorthian ...yep, I know all about Trobalt. I was in on it from the beginning and was a trialee myself. Increased my H though. You can see in User Reports if interested as reached my own intended dose goal of 600 mg/day/total.
OK...all for now. Best, Zimichael
@Zimichael
Yes this just takes so damn long (I can't imagine how you feel with T for such long time).
Lets hope real meds wont make your H worse in future. Have you tried keppra?probably @Danny Boy could tell you of his experience with H and keppra.
Yes this just takes so damn long (I can't imagine how you feel with T for such long time).
Lets hope real meds wont make your H worse in future. Have you tried keppra?probably @Danny Boy could tell you of his experience with H and keppra.
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
No way I am going near Keppra right now. It was next on my list, but I am too trashed to try ANY new med or "experiments". But thanks...Very easy to burn myself out real fast much as I would like to not have as severe T and H, etc., etc., etc. Will see how the future goes as it's day by day... Thanks though...Signing off.
Zimichael
ruben ruiz
Member
@swc5150 : great point
Let's not forget the dose they used in the trial is quite low compared to the one used in pre-clinicals.
Without a doubt it will be adjusted/increased. Which means the effects will improve even more, perhaps replicate what happened in the pre-clinicals i.e abolished evidence of T.
Let's stay positive!
Let's not forget the dose they used in the trial is quite low compared to the one used in pre-clinicals.
Without a doubt it will be adjusted/increased. Which means the effects will improve even more, perhaps replicate what happened in the pre-clinicals i.e abolished evidence of T.
Let's stay positive!
Q. Can I have some details of the drug itself, and how will it be administered during the trial?
A. AUT00063 is an orally active preparation that will be taken as 4 capsules once daily with breakfast each day continuously for 28 days. This drug is presented in yellow capsules each of 200mg. Special tests and important questionnaires will compare tinnitus on day 28 with day 1 of taking "063".
Thats my point, we just dont know, so saying they are doing low doses might be incorrect, as we dont know if 800mg is low or not- for Keppra it is low, for Trobalt it is high.....
Why would they risk giving people sub therapeutic doses and crash the trial....If the trial fails, Autifony is done!
- May 7, 2015
- 1,050
- Tinnitus Since
- 29.09/2014
- Cause of Tinnitus
- Acoustic trauma using headphones
Like DannyBoy says its an on going thing, and to compare different drugs, even though similar in action, is just meaningless. Just look at the equivalent chart for benzos for instance. They are all the same once its in your body:
http://www.benzo.org.uk/bzequiv.htm
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