Sound Pharmaceuticals (SPI-5557 & SPI-1005)

Thanks for the clarification. I thought it was coming out either the end of this year or early next year but I guess that’s not happening.

 

New company investigating Ebselen for recurrent C-diff infections (pre-clinical and much further behind but interesting):

Facile Therapeutics

 

They should be testing this on people who develop or have an increase in tinnitus post COVID-19 vaccine too.

 

God damn, going to have to wait another two years for this stuff to come out, and that's assuming it gets FDA approval. Not sure if I can do that.

I don't have $5k to throw at a shady Chinese lab.

 

I know I am getting closer and closer everyday to the point where I just want to throw all my money at my ear problems.

 

As a warning to everyone trying to order Ebselen or other chemicals from China:

Request first a sample to test for a low price before ordering a larger quantity. I ordered from a Chinese supplier a probe to check and it turned out to be scam. So even if you are provided with legit NMR, HPLC and mass spectroscopy data, it can still be a scam. I was quite happy that I did not order 25 or even 50 grams right away...

 

Can someone please explain to me the new "hype" over Ebselen? To what extent this drug could help tinnitus? How far is it from the market (what clinical phase is it in now)?

Thanks!

 

Going with a US manufacturer is probably the only way to go (the key is finding someone in research to order it). Glad you got the sample tested.

 

It's a very complex drug. I posted about its mechanism of actions on page 23 of this thread.

So far it has lowered tinnitus clinically in Meniere's patients (the only group tested so far) and in some rodent studies showed behavioral improvements that reflected tinnitus and hyperacusis reduction (the various studies have been posted in this thread).

The thing Ebselen seems to do best is address glutamate mediated neuroexcitability and crosses both the BBB and blood cochlear layer really well.

 

I did not even have to test the sample (I still will for sure, simply because I have access to NMR spectroscopy). Basically the package I got sent contained a cheap foundation ingredient of cosmetics and all the declarations for customs as well as the shipping invoice stating the same. Since they did not respond to my emails ever, I assume that the customs declaration was correct and it is a scam (rather than using a faked customs declaration to avoid customs fees on my end).

What still bugs me is why they even made the effort to send something. They could just have taken the money for express shipping as well and sent nothing. Instead, they still made the effort to send something.

I still think that one can go with Chinese suppliers, but one must stay wary. Also, it could be the case that one is on average cheaper off with US suppliers rather than having to find a trustworthy supplier in China by trial and error.

 

That is really strange...

 

Oh I think I know this one. Basically they are banking on you not contacting the financial institution you used to pay them. If you do so and they give you your money back, they will claim it was a mistake and presumably send you the actual stuff. They operate on the assumption people will not do this so even by sending X chemical product (which probably costs them pennies), they are making a profit. It's a common scam used by Chinese online retailers, whenever they pile up too many complaints or bad reputation, they just change their name and set up another virtual store on the many websites they use.

 

This would have made sense if I had used an e-commerce platform or for example PayPal. But this was old school just via email (I found the supplier using chemicalbook.com) and bank wire, so there would have been 0 chance for me getting the money back in any case. Also I have to say that they went quite far for scamming as to even provide NMR, mass spectroscopy and HPLC data which all were correct (I checked these with a friend who has a PhD in theoretical chemistry).

 

Sound Pharmaceuticals awarded $3.1M NIH grant to test SPI-1005 in COVID-19

 

That's awesome news.

 

That is great news. I hope it rushes this thing to market so we can do our own trials for tinnitus.

When you search for SPI-1005, on the one hand it amazes me how many things this is being trialed for: bipolar, depression, COVID-19 etc.

On the other hand, it saddens me when it's already been reported to some extent to give tinnitus / hearing benefits, and tinnitus is something where there is no treatment... Don't get me wrong, if it works and we are able to get hold of it because it's got out there for something else, then I'm all for it, but it just highlights how tinnitus just doesn't seem to be recognized at all even though there are so many sufferers. I mean for depression there's already tonnes of drugs and options out there that work. Can't we tinnitus sufferers just have one treatment.

Please, sir... I want ONE option.​

 

I would still be very cautious as to put too much hope into SPI-1005.

What made me wonder in the last weeks is the death of Kent Taylor. SPI-1005 and HPN-07 would have been easily available for a millionaire and surely one tries everything before going into drastic measurements. Obviously if there were a 'real' cure which would eliminate tinnitus for most of us, it would probably be all around the news.

SPI-1005 is nice because it might be one of the drugs to hit the market early, but I fear that it is at most a treatment to alleviate it for some people.

 

Not everyone is in the know about medical research. It's generally only us who spend a lot of time on this forum.

That said, I think many of us would kill for alleviation and if this brings us any we'd be very happy. I know I would be.

 

Sadly looks like Kent wasn't able to cope and took his life before he could do any research, I'm confident that if he knew about the pipeline he would have waited at least a bit more.

 

There is a tendency for the older generation (who didn't get internet until their late 40s) to pay for the best doctor they can find and just trust what they have to say and not second guess it. Sadly he may have been told psychological treatment was all he could expect and may not have sought out to try things like Ebselen (which is hard to get even if you can afford it).

I think especially when you are older, too, you may assume you don't have many good years left anyway.

 

I think too some people, myself included, find solace in research. It makes me feel informed, which by extension makes me feel empowered. Others - like my mom - find it more anxiety inducing.

We both have severe tinnitus but seek refuge in vastly different sources.

She even knows about the forums here but really didn’t have any desire to go to the research section until my hearing problems worsened, and even then it was mostly for my sake.

 

Being rich does not make you better informed. He had had tinnitus for a few months only, perhaps he was not even aware about Tinnitus Talk.

Most likely he only put trust in what doctors told him hence he came to the conclusion there is no hope whatsoever.

 

@FGG made a good point about his generation's attitude to doctors. We are the odd ones out. Most people never really research about their conditions and put all trust into the most expensive doctor they can find.

 

This is anecdotal but as a vet, I almost never had older clients who researched the conditions of their pet on their own. I made and printed a bunch of handouts especially for them because they only wanted to get their info from the vet (or weirdly, Facebook).

With Gen X (I'm one), it seemed 50/50 would already have some ideas when they walked in the door, but Millennials often gave me the best, most relevant and detailed histories and had an idea of some of the common differentials I would likely try to rule out.

I can't imagine it's any different at the ENT's office.

 

I agree. He most likely went to the most expensive ENT he could find, he gave him the good ol' spiel which left him hopeless. And then he took his own life.

 

An ENT with six tuning forks instead of just two.

Mine wouldn't even make eye contact with me.

 

"The mission of NCATS is to transform the translation of scientific discoveries so that new treatments and cures for disease can be delivered to patients faster. The budget provided to NCATS for fiscal year 2018 is $557,373,000"

 

Question for anyone who can answer: If this were able to pass the trials for COVID-19, how hard would this be to get off-label for tinnitus/hyperacusis?

It seems that this drug is already pretty well tolerated which is good, it is just a matter of time until it can get to the market.

 

Off label use is mostly about finding the right doctor unless it's a common off label use (e.g. antidepressants as sleep aids). It might require doctor shopping which is an inconvenience but doable.

 

I thought it would be similar to that. Thanks for the info. It would suck for anyone who has an HMO to do something like this because they tend to be more conservative.