Frequency Therapeutics — Hearing Loss Regeneration
- Thread starter RB2014
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Matrine, derived from the herb Radix Sophorae Flavescent and marketed as "Ku Shen";
Astaxanthin.
https://www.tinnitustalk.com/threads/neurotrophin-3-regenerates-cochlear-synapses.31752/
I'm not convinced MIT or Harvard are leaders when it comes to drug therapies. No doubt they've achieved a lot but I don't look at them as leaders.
I still have a heavy amount of faith in Hough, but hey, if either Frequency or Hough beat it, we both win! Here's to hope.
Nope. Nope. Nope. I don't think it works this way. These growth factors probably don't reach the inner ear even if their concentration is increased, it's nothing like locally delivered NT-3 or BDNF.
As an example, GABA is a neurotransmitter; it is very important and very active in the brain, but if you take GABA supplements by mouth, it won't cross the blood-brain barrier and won't have the effect that you'd expect.
Astaxanthin does cross the blood-brain barrier!
Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6117702/
So I just got off the phone with my local testing center. I don't qualify for FX-322 because I don't have enough hearing loss at certain frequencies. They wouldn't tell me what loss you needed because that's "confidential". They also just happened to be testing for OTO-313. Great! I thought. Turns out I don't qualify because I have tinnitus in both ears.
WTF difference does that make? They don't know enough about tinnitus to begin with, so why would that matter if I have it in both ears?
Fuck these places.
WTF difference does that make? They don't know enough about tinnitus to begin with, so why would that matter if I have it in both ears?
Fuck these places.
ajc
Member
- Feb 6, 2018
- 1,170
- Tinnitus Since
- 11/2002; spike 2009; worse 2017-18
- Cause of Tinnitus
- Loud music - noise damage
Because unilateral tinnitus is very uncommon, and it usually means you have something physical going on, like acoustic neuroma.
Except an acoustic neuroma is part of their exclusion criteria, so definitely not that.
@Rb86 I agree that it makes no sense, tinnitus is caused by the brain detecting something wrong in the ears. If OTO-313 can stop the signal sending that something is wrong, the brain should stop trying to fix it. It makes no sense why they would only do one ear.
It's probably a testing thing. It's probably easier to detect if a drug helps with tinnitus (or not) if you have it in one ear and that ear gets injected.
RingingBrother
Member
- Oct 27, 2019
- 96
- Tinnitus Since
- 2018
- Cause of Tinnitus
- Noise induced hearing loss
Hey just created an account after following this thread for a while.
Does anyone know how much time till release of FX-322 can be shaved off by the fast track status compared to if they didn't get it?
Does anyone know how much time till release of FX-322 can be shaved off by the fast track status compared to if they didn't get it?
I disagree. And they didn't even ask my tinnitus symptoms. Like the fact that I have a low subwoofer warble in my left ear, a 935 Hz tone in my right, and a 15000 Hz hiss in both. Yes I could tell if it was helped or not. I mean what kind of horse shit is that.
Considering TMJ is one of the causes of unilateral tinnitus, how can they test a drug designed to repair an input system where the insult is ongoing? Especially if they don't exclude these cases. Or am I missing something?
So did you go through the testing they require or did you just send them your audiogram?
It was under the umbrella of the ENT docs I've been to. They already had my audiograms in house.
I read somewhere generally 6-9 months. But honestly it will depend on the drug and the trial design. I remain convinced that since you won't have to follow patients long term to assess benefits, trials can be relatively short and compact. I mean, you should know the maximum effect of an injection after 3-6 months. Hair cells don't seem to take that long to grow.
Hopefully they get breakthrough or orphan drug status. That will help even more.
Hmm. Interesting. I have tinnitus in both ears much worse in my left. No hearing loss in right ear but high frequency tinnitus (nothing compared to left) in right. Also have low frequency hearing loss with low frequency tinnitus in left ear.
I sent over 3 of my most recent audiograms and they said I qualified for the next step. But they didn't even ask any questions regarding my tinnitus. I obviously told them my tinnitus is a lot more bothersome than the hearing loss issue. All they really said was ok.
Yep. I guess you qualified with whatever "magic" "confidential" frequencies you've lost. They wouldn't tell me what was required even though I asked. I said I'd like to relay the info to the tinnitus forum I'm a part of. Sorry sir that's confidential. Bunch of pure horse shit.
The tinnitus part of the conversation was because they're also testing Otonomy's drug, OTO-313 I believe it's called. Frequency doesn't give a hoot about tinnitus from what I can gather at this point.
At any rate, please keep us informed. Inform us that you're not allowed to discuss it with us if that's the case too.
Is REGAIN pretty much the same thing as FX-322? Just further along in the process?
Especially here, now that there's an anecdote floating around about a guy having his tinnitus improve after being in the trial.
FX-322 creates both more supporting cells and hair cells. The REGAIN drug only transdifferentiates supporting cells. That means it depletes your supporting cells, possibly limiting future treatments. FX-322 also uses a hydrogel to ensure as much as possible that the drug permeates through the round window membrane. As far as far as I know, the REGAIN drug doesn't use a sophisticated delivery method. Anyway, I wouldn't be surprised if the more severe hearing loss patients end up needing both FX-322 and REGAIN for maximum benefit. And the REGAIN could still be used in combination with a gel of some sorts.
Would you have gone through with it if you would have qualified? I guess I'm just worried about possibly making things worse. Also the fact that I have low frequency hearing loss. A lot of people have stated it might only work on higher frequencies right now. And if doesn't work about taking myself out of the market for anything else in the future if it doesn't work. Obviously I still have to still go through the screening phase which sounds very strict. But just some of my concerns.
Time and place. Frequency Therapeutics is now recruiting near the areas of a few our members, so we're discussing possibly participating. Also, the supporting cells issue and delivery method as stated above.
The lady running the study who called me said it's injected through the ear drum, and it's something they do all the time for other things and that it's safe. It certainly made me more intrigued than prior.
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