Frequency Therapeutics — Hearing Loss Regeneration

[just1morething]

SMH.

It has already passed safety tests. By your logic we should never get anything that could treat our tinnitus because it may have unforeseen side effects. Also, Thalidomide was obviously not thoroughly tested.

Here, you may need this:

http://www.free-iqtest.net/

It would be nice to try FREQ injections early but they have to follow FDA rules and regulations like everyone else. Also FREQ stock could skyrocket or plummet if the word got out that it worked/didn't work on tinnitus for a few individuals. That could lead to some illegal trading activity much like insider information.

Some wanted Autifony's drug to be released early. It didn't pan out in the end anyway. We are a desperate bunch that need relief ASAP, but sometimes things work out better with the standard protocol. Obviously no one wants to suffer any longer than they have to, I sure don't.

 

[FGG]

It would be nice to try FREQ injections early but they have to follow FDA rules and regulations like everyone else. Also FREQ stock could skyrocket or plummet if the word got out that it worked/didn't work on tinnitus for a few individuals. That could lead to some illegal trading activity much like insider information.

Some wanted Autifony's drug to be released early. It didn't pan out in the end anyway. We are a desperate bunch that need relief ASAP, but sometimes things work out better with the standard protocol. Obviously no one wants to suffer any longer than they have to, I sure don't.

As much as they list on their website not being able to handle the demand for expanded use I can't help but wonder if being publicly traded has anything to do with it.

Lots of people followed DMD kids' moms on Twitter (one had posted videos of their son skiing) when buying Sarepta stock. I don't see why that wouldn't happen here.

 

[JohnAdams]

It would be nice to try FREQ injections early but they have to follow FDA rules and regulations like everyone else. Also FREQ stock could skyrocket or plummet if the word got out that it worked/didn't work on tinnitus for a few individuals. That could lead to some illegal trading activity much like insider information.

Some wanted Autifony's drug to be released early. It didn't pan out in the end anyway. We are a desperate bunch that need relief ASAP, but sometimes things work out better with the standard protocol. Obviously no one wants to suffer any longer than they have to, I sure don't.

I'm glad you enjoy tinnitus so much.

 

[JohnAdams]

Also FREQ stock could skyrocket or plummet if the word got out that it worked/didn't work on tinnitus for a few individuals. That could lead to some illegal trading activity much like insider information.

Same thing goes for people in the trials. A patient getting it under expanded use could also sign an NDA just like the trial participants so your example is actually terrible.

 

[just1morething]

I'm glad you enjoy tinnitus so much.

I really hate it. It completely ruins my life. I'm trying to figure out how to deal with it every day. I suppose the trial participants of FREQ have to take/sign an oath of silence and confidentiality. I forgot what NDA stands for. I'm all for expanded use if it's at all possible.

Okay I see NDA is a nondisclosure agreement. I've never been in a trial so don't know all the rules.

 

[Mathieulh]

followed by

..in the same post.

So what's it John? Are we going to believe in the tests or aren't we?

You are willing to try every drug there is that hasn't been tested yet but start bitchin' about ototoxicity and throw a tantrum because "researchers should test drugs more thoroughly"

The thing is there's nothing available as far as treatment goes, meanwhile, although something could be used that might alleviate, if not cure, tinnitus, people throw themselves off buildings because of it everyday, as, mark my words, tinnitus does kill.

 

[Flamingo1]

What's the best Frequency Therapeutics link to share for people who have completely lost hope? As I recall there have been some compelling videos explaining exactly how their drug works and how it could help to restore hearing.

 

[rei]

My thought is that since they've already succeeded in lab animals and made it through phase one then there's every reason to be optimistic. Just started an E trade account and I think I'm going to buy a few shares.

 

[Lucifer]

If they were to allow expanded use how would this work? What would the process be?

 

[RingingBrother]

This has passed 2 safety trials.

It repairs things that are implicated in tinnitus.

We deserve the freedom to have an ENT shoot our ears up with it now.

Even thoroughly researched drugs that were commercially available still hold a danger. We had Trobalt, Thalidomide (Softenon), and a host of others. I appreciate your willingness to take one for the team, but as for me, I rather would not replace one ailment with another. Or worse, not have it help for tinnitus and still get other problems.

If something goes catastrophically wrong in a patient they would have to halt the clinical trials and inform the shareholders. I think it's a good safety sign the trials are still going as planned and haven't been stopped.

 

[GregCA]

The thing is there's nothing available as far as treatment goes, meanwhile, although something could be used that might alleviate, if not cure, tinnitus, people throw themselves off buildings because of it everyday, as, mark my words, tinnitus does kill.

Not that I don't believe tinnitus is a root cause for suicide, but sensational statements like this tend to paint us sufferers with a broad "catastrophizing brush" and diminish our credibility when we do not attach any data to back it up. While you mean well, it accomplishes the opposite of what you are intending.

Do you have any supporting evidence? If yes it would be fantastic.

The only concrete data I found on tinnitus suicide is this study about suicidal ideation: https://journals.lww.com/thehearing...l_Ideation_Among_Patients_with_Chronic.6.aspx

 

[alex1975]

I came across an article that talks about a new drug that was just approved by the FDA to treat migraines. Looks like the trial started July 2016 and it was approved by the FDA for sale this week.

My point is, hopefully this will be the sort of time line we can expect for FX-322 to jump through all the hoops.

https://clinicaltrials.gov/ct2/show/NCT02828020

 

[JohnAdams]

If they were to allow expanded use how would this work? What would the process be?

You would bring the information to your primary care doctor or your ENT and try and convince them to e-mail the pharma company and say "hey I have patient that may benefit from your medicine" and then the pharma company would either agree or disagree to provide the medication.

 

[JohnAdams]

I came across an article that talks about a new drug that was just approved by the FDA to treat migraines. Looks like the trial started July 2016 and it was approved by the FDA for sale this week.

My point is, hopefully this will be the sort of time line we can expect for FX-322 to jump through all the hoops.

https://clinicaltrials.gov/ct2/show/NCT02828020

I was force fed Ritalin from about the age of 8 to 14 when I was old enough to realize that I could say "Hey I'm not taking this anymore and I'm big enough to make you feel physically threatened so fuck off." I suffered many, many horrible migraines during that period of time. I was just a little kid and I would get migraines so bad that I would have to barricade myself in a quiet, dark room and lay perfectly still with a pillow over my head for hours on end. I haven't had a migraine since the day I stopped taking that poison. Not even the worst hangover can compare to the torturous pain of a migraine.

 

[JohnAdams]

If something goes catastrophically wrong in a patient they would have to halt the clinical trials and inform the shareholders.

@ChrisBoyMonkey

Reality isn't matching your perception of it.

 

[Lucifer]

You would bring the information to your primary care doctor or your ENT and try and convince them to e-mail the pharma company and say "hey I have patient that may benefit from your medicine" and then the pharma company would either agree or disagree to provide the medication.

Do you reckon they will allow expanded use in Phase 3?

 

[JohnAdams]

I really hate it. It completely ruins my life.

Yeah man and I'm in this with you. I'm not just emotionally flailing around like an idiot. We would do better to be an organized patient community being as vocal as we can and trying to take partial ownership of our situation. That is the essence of so-called democracy. Society makes such a big deal of college degrees and badges of authority, which is nonsense because people can learn all kinds of stuff without a degree, yet, I have a BS degree in Biomedical Engineering Technology, so if anyone has a relevant opinion in this community besides men like Justin De Moss, it is me. I work for a huge corporation. I get the ins and outs of huge corporate operations, the government etc.

Here's reality:
1. Tinnitus is a fucking horrible torturous hell on earth.
2. There are multiple medicines that have been shown to be safe, and may very well treat this condition.
3. The thing holding us back from relief at this point is, for acute cases, a lack of willingness to administer FDA approved steroid injections into the middle ear, and for chronic, a toilet-clogged approval process that won't let us have access to medications that will more than likely treat our hearing damage and tinnitus. For example, the Hough Ear Institute pill.

Instead we get Lenire, which obviously sucks, and trials for crap like OTO-313 that fucked @ChrisBoyMonkey over immensely.

We would be better off to organize and do whatever we can to bring as much attention to our plight as possible.

@ChrisBoyMonkey should be legally allowed to take that medication right now if he desired.

 

[JohnAdams]

Do you reckon they will allow expanded use in Phase 3?

I have no idea fren.
Their website says they aren't capable to handle expanded use at this time, but,

We could as a large community push to influence this. The HIV community did it.

 

[Badger19]

SMH.

It has already passed safety tests. By your logic we should never get anything that could treat our tinnitus because it may have unforeseen side effects. Also, Thalidomide was obviously not thoroughly tested.

Here, you may need this:

http://www.free-iqtest.net/

Have the ingredients been tested together and in the inner ear?

 

[JohnAdams]

Have the ingredients been tested together and in the inner ear?

For FX-322:
Yes, in two successive, 1 year-long FDA administered safety trials.

 

[ChrisBoyMonkey]

Yeah man and I'm in this with you. I'm not just emotionally flailing around like an idiot. We would do better to be an organized patient community being as vocal as we can and trying to take partial ownership of our situation. That is the essence of so-called democracy. Society makes such a big deal of college degrees and badges of authority, which is nonsense because people can learn all kinds of stuff without a degree, yet, I have a BS degree in Biomedical Engineering Technology, so if anyone has a relevant opinion in this community besides men like Justin De Moss, it is me. I work for a huge corporation. I get the ins and outs of huge corporate operations, the government etc.

Here's reality:
1. Tinnitus is a fucking horrible torturous hell on earth.
2. There are multiple medicines that have been shown to be safe, and may very well treat this condition.
3. The thing holding us back from relief at this point is, for acute cases, a lack of willingness to administer FDA approved steroid injections into the middle ear, and for chronic, a toilet-clogged approval process that won't let us have access to medications that will more than likely treat our hearing damage and tinnitus. For example, the Hough Ear Institute pill.

Instead we get Lenire, which obviously sucks, and trials for crap like OTO-313 that fucked @ChrisBoyMonkey over immensely.

We would be better off to organize and do whatever we can to bring as much attention to our plight as possible.

@ChrisBoyMonkey should be legally allowed to take that medication right now if he desired.

Lenire. You probably don't keep up with that thread much. It's still up for grabs but it looks like it's the first thing on the market made specifically for tinnitus that can actually reduce it. I just might be getting one soon myself, so I read every single post on the reviews and on the main thread. So far, it looks like it's the real deal. Real as in they know it is not a cure, deal (subjective) as in $2,400 dollars for a chance at a real reduction, which is way better than the scam level mediocre "treatments" that were Desyncra and Levo.

I did do an audiogram shortly after the shot, my hearing was the same and it doesn't feel like it has changed at all. The tinnitus isn't anymore worse than before but not better either.

That being said, I would try the Hough pill right now if given the chance. I would need more information for FX-322 though.

 

[RingingBrother]

I came across an article that talks about a new drug that was just approved by the FDA to treat migraines. Looks like the trial started July 2016 and it was approved by the FDA for sale this week.

My point is, hopefully this will be the sort of time line we can expect for FX-322 to jump through all the hoops.

https://clinicaltrials.gov/ct2/show/NCT02828020

Hopefully we can have FX-322 by 2021 or sooner.

 

[alex1975]

I was force fed Ritalin from about the age of 8 to 14 when I was old enough to realize that I could say "Hey I'm not taking this anymore and I'm big enough to make you feel physically threatened so fuck off." I suffered many, many horrible migraines during that period of time. I was just a little kid and I would get migraines so bad that I would have to barricade myself in a quiet, dark room and lay perfectly still with a pillow over my head for hours on end. I haven't had a migraine since the day I stopped taking that poison. Not even the worst hangover can compare to the torturous pain of a migraine.

Sorry to hear that buddy. At least now it's all behind you… It's really unbelievable the side effects of a lot of these drugs.

 

[Bartoli]

The thing is there's nothing available as far as treatment goes, meanwhile, although something could be used that might alleviate, if not cure, tinnitus, people throw themselves off buildings because of it everyday, as, mark my words, tinnitus does kill.

As sad as that is, launching a medicine before its time can have really bad consequences too. With a condition as common as this one, imagine people rushing to get it and it's not safe...
I mean something as stupid as ibuprofen could give you liver damage if you don't respect the dose.

I'm as much for a cure as the next guy but we're not gonna get it quicker this way. Why is the feeling of "heartless researchers" the one that prevails on here so often? I'm gutted for that! These are the people researching our cause! They could very well be researching other things instead. Cures for illnesses that are sexier. Yet here we are as a community, pissing them off with our conspiracy theories.

There's reasons they have to comply with FDA standards. It's so they won't get shut down for rushing things and potentially ruin an effective treatment. You want to be a pioneer and go for expanded use then by all means do that. I initially said I admire that willingness to put your health on the line for the cause. That was when @JohnAdams jumped at my throat for not aligning with his *rah-di-cal* views.

 

[Stefaniie]

We could as a large community push to influence this. The HIV community did it.

How would we do that? Aside from e-mailing, because I feel like those get largely ignored

 

[d'Wooluf]

I came across an article that talks about a new drug that was just approved by the FDA to treat migraines. Looks like the trial started July 2016 and it was approved by the FDA for sale this week.

That was just the phase 3 trial. Presumably there were other trials before that. Frequency Therapeutics have just commenced a phase 2a trial which is scheduled to take a year. That being said, maybe the nature of the treatment in this case makes for a quicker process and decision. Maybe their Japanese partners will take it to the Japanese version of the FDA for an expedited approval. Wish I knew.

 

[Badger19]

For FX-322:
Yes, in two successive, 1 year-long FDA administered safety trials.

That was only phase 1. Phase 2 will test safety with larger doses and efficacy.

 

[Badger19]

As sad as that is, launching a medicine before its time can have really bad consequences too. With a condition as common as this one, imagine people rushing to get it and it's not safe...
I mean something as stupid as ibuprofen could give you liver damage if you don't respect the dose.

I'm as much for a cure as the next guy but we're not gonna get it quicker this way. Why is the feeling of "heartless researchers" the one that prevails on here so often? I'm gutted for that! These are the people researching our cause! They could very well be researching other things instead. Cures for illnesses that are sexier. Yet here we are as a community, pissing them off with our conspiracy theories.

There's reasons they have to comply with FDA standards. It's so they won't get shut down for rushing things and potentially ruin an effective treatment. You want to be a pioneer and go for expanded use then by all means do that. I initially said I admire that willingness to put your health on the line for the cause. That was when @JohnAdams jumped at my throat for not aligning with his *rah-di-cal* views.

Absolutely. In the 90s someone died from a gene therapy trial. Funding for gene therapy disappeared almost completely. It took like a decade for scientists to go at it again.

 

[FGG]

Lenire. You probably don't keep up with that thread much. It's still up for grabs but it looks like it's the first thing on the market made specifically for tinnitus that can actually reduce it. I just might be getting one soon myself, so I read every single post on the reviews and on the main thread. So far, it looks like it's the real deal. Real as in they know it is not a cure, deal (subjective) as in $2,400 dollars for a chance at a real reduction, which is way better than the scam level mediocre "treatments" that were Desyncra and Levo.

I did do an audiogram shortly after the shot, my hearing was the same and it doesn't feel like it has changed at all. The tinnitus isn't anymore worse than before but not better either.

That being said, I would try the Hough pill right now if given the chance. I would need more information for FX-322 though.

Just to clarify, are you saying the spike from the drug has now subsided? That's great news.

 

[Rb86]

Lenire. You probably don't keep up with that thread much. It's still up for grabs but it looks like it's the first thing on the market made specifically for tinnitus that can actually reduce it. I just might be getting one soon myself, so I read every single post on the reviews and on the main thread. So far, it looks like it's the real deal. Real as in they know it is not a cure, deal (subjective) as in $2,400 dollars for a chance at a real reduction, which is way better than the scam level mediocre "treatments" that were Desyncra and Levo.

I did do an audiogram shortly after the shot, my hearing was the same and it doesn't feel like it has changed at all. The tinnitus isn't anymore worse than before but not better either.

That being said, I would try the Hough pill right now if given the chance. I would need more information for FX-322 though.

Hey, awesome news it's calmed down to pre-shot levels!! Either the drug is bogus or you got a placebo. I'm just happy for you it didn't permanently make it worse.