Sound Pharmaceuticals (SPI-5557 & SPI-1005)

How do I do this? Help would be greatly appreciated. If this is implying I could literally get Ebselen, you are quite literally saving my life and I wish I could cure all of you.

Shit... I'm in the US. Maybe I could have one of my European friends deliver it to me.

 

Your doctor applies for you (they should know the process) and contacts the company.

More here:

Wikipedia: Expanded Access

I don't know how long that takes, though, could be a few months and the company doesn't have to say yes but this is the safest and best option by far.

If it is literally life or death in an immediate sense, these labs (below) came up on a simple Google search but there are probably at least 100 in the US alone. **I cannot vouch for any of these labs or if they are of the purity and formulation to achieve the same safety or even penetrance/effectiveness. This is extremely risky, so imo this should be reserved as a last ditch for people who would otherwise take their life. If anyone goes this route, I would very strongly also recommend finding an outside lab (maybe at a university toxicology department?) to test a sample first for purity:

https://www.caymanchem.com/product/70530/ebselen

https://us.vwr.com/store/category/ebselen/10586598

https://www.tocris.com/products/ebselen_5245

https://www.alfa-chemistry.com/ebselen-cas-60940-34-3-item-284902.htm

https://focusbiomolecules.com/ebselen-glutathione-peroxidase-mimic/

Etc etc etc.

All of these say "for research purposes only" and they probably vary in how they check for this. It's possible they check for lab credentials. It's also possible they go on the honor system. I really don't know. You may have to find someone affiliated with a lab to order this or turn to the dark web where anything synthesized in a lab is available (I do not know how to do this personally).

 

I’ve asked my doctor, but he was pretty pessimistic about it. I’m going to keep asking, though.

 

That is insanely expensive though, about $1900 daily for the required 200 mg dosing — unless you have $13,300 to burn weekly.

Science.bio was our best bet selling Ebselen for $60/g or just $12/day, but they don't plan on restocking any time soon.

I've yet to find a source that isn't either selling for $200+/gram or to research labs only.

I've compiled a list of every vendor I could find online. Alibaba is by far the cheapest.

Maybe someone could take one for the team and buy a gram from them & get it tested:

https://www.alibaba.com/product-detail/buy-98-powder-CAS-60940-34_60759100921.html
$24.5/100 mg; $49/day (cheapest but also Chinese lab)

https://www.chemdirect.com/ebselen-1x5mg-v1941-5mg.html
$460/100 mg; $920/day

https://www.medchemexpress.com/Ebselen.html
$288/100 mg; $576/day

https://in.carbanio.com/chemical/ebselen-60940-34-3-ch-o57lu6h
$176/100 mg; $352/day

https://www.tocris.com/products/ebselen_5245
$714/100 mg; $1428/day

https://www.invivochem.com/ebselen.html
$150/100 mg (cheapest American one); $300/day

https://www.selleckchem.com/products/ebselen.html
$788/100 mg; $1576/day

https://www.stressmarq.com/products/small-molecules/inhibitor/ebselen-sih-204/
$228/100 mg; $456/day

https://www.enzolifesciences.com/ALX-270-097/ebselen/
$316/100 mg; $632/day

https://www.adooq.com/ebselen.html
$460/100 mg; $920/day

https://www.bioshopcanada.com/secure/detail.asp?offset=420&Pin=EBS270
$500/100 mg; $1000/day

https://www.antibodies-online.com/inhibitor/1304132/Ebselen/
$900/100 mg; $1800/day

 

@weab00 doing God's work.

Also worth noting that that 200mg was the low-dose version of the SPI clinical trials. Their results, for Meniere's at least, were better when taken at 400mg, if I remember correctly - 95% improvement relative to placebo (200mg saw 65% improvement). Value for money though perhaps doesn't work out to take higher dose - twice the money and only 30% more benefit. I have no science to back this but perhaps some middle ground of 300mg a day could be a happy middle ground.

Also @__nico__ if you do go for this, make sure to look into how you're supposed to take it because I don't think any of these labs deliver it in a form that's ready to take orally.

Edit: and those results were I believe for a 21 or 28 day course. A week might not do anything.

 

21 .

28 days at high dose 400 mg will set you back $2700. Which I guess is not too bad in the grand scheme of things if it could effectively cure hyperacusis, but that's not a guarantee.

 

How does one take it orally? It's a powder, right? What would I have to dissolve it in?

 

When I check Sound Pharmaceuticals' product pipeline, the first study they link to is this one, which started in September 2011.

Nearly 10 years later and it still isn't possible to say if Ebselen is something good for the ear?

Probably if it's safe, they should just release it, and let this board here decide if they should proceed with their efforts.

 

I found a lab here in Germany to make Ebselen for me.

 

Interesting... I have read your other posts, and must say, I am really sorry for you to be in this crap situation.

I would like to hear more of how it turns out and if you decide to try the Ebselen.

 

Definitely keep us updated. Everyone here is dying to know how Ebselen affects tinnitus.

Do you happen to have hyperacusis and visual snow syndrome as well?

Also, how much is the lab charging you if you don't mind me asking?

 

I just want to chime in that "how much it affects tinnitus" is going to be very dependent on how much in each individual is inflammatory or neuro-excitatory. This shouldn't help with synapse loss or hair cell loss, for instance if there isn't also a larger inflammatory component.

Acutely, it should help almost anyone, chronically will vary quite a bit in my opinion and will be highly individual.

But the more stories we get with clinical history, it should help figure it out.

 

I'm not sure, to be honest, but I remember someone on here posting previously about needing DMSO to take it. If you go on this lab's page and look at the solvent & solubility table, you will find the following for in vivo administration, which would seem to be consistent:

• 1. Add each solvent one by one: 10% DMSO 40% PEG300 5% Tween-80 45% saline
  
  Solubility: ≥ 2.5 mg/mL (9.12 mM); Clear solution
  
  
• 2. Add each solvent one by one: 10% DMSO 90% corn oil
  
  Solubility: ≥ 2.5 mg/mL (9.12 mM); Clear solution

It does then say in small sprint that that lab provides the solvents.

I still don't know whether this is how it should be taken though. Might be an idea to get in contact with someone who knows the answer to this.

 

I’d like to go on the record that trying to secure this stuff on the market and then consume it based on a “back of the napkin” dosage schedule seems like a terrible idea.

With that out of the way, I’d highly encourage a scientific, or near-scientific, method be used to determine if this stuff creates the desired effect.

For example:
- Establish a tinnitus “baseline” completing the TFI a few weeks prior to beginning the regimen.

- Establishing a hyperacusis baseline by completing a hyperacusis assessment.

- Establishing any other basic hearing handicap baseline.

- Retaking the tests in specific intervals after the drugs has been consumed. IE: at 30-days, 60, 90.

 

I'm still curious to the extent reactivity could be inflammation-related, if this could help those of us spiking from daily noise. Only time will tell.

 

I think reactivity is among the most promising indications for drugs like this personally.

 

If this is true I could largely go back to a semi normal life (while taking good care of my hearing of course). My baseline is annoying but not life disabling. The reactivity however, very much is.

 

Someone told me they had an online friend with loudness hyperacusis who ordered a 28 day supply of Ebselen and has already seen significant improvements after 3 days.

 

Damn, but only loudness hyperacusis?

 

I would like to know if it was a temporary or permanent solution after their 28 day supply of Ebselen runs out.

 

Would be cool if they could articulate in greater detail, but any positive news is welcome : )

 

I firmly believe if this does help noxacusis it will take a long time for the pain fibers to become desensitized again. There won't be an instant result imo for whatever does end up helping, if this is one of those things.

Things that are the direct result of neuroexcitability by itself (reactivity, loudness hyperacusis) should see quicker results.

 

I need to know more about this. As far as I know, it isn't delivered in a form that can be taken orally.

Could you or your friend articulate more?

 

For the sake of many of us who are or who have been on the brink with this condition, could you please try to persuade this person to make an account of their experience with Ebselen so far somewhere on Tinnitus Talk? It would be great to hear it from the horse's mouth and for us to be able to ask questions.

 

If they do... Have them create some kind of "data diary" of their experience. We need to understand to what extent it has helped them, how long it lasts, how fast they notice the effects etc...

"It seems to help me" doesn't cut it for me personally.

 

I do not know this person, the stranger who contacted me would have to do that. But they still haven't responded to his initial questions which is weird.

 

@weab00, have you happened to track down an Ebselen vendor in the EU?

From what I read while trying to follow the discussion here, it seems kind of tricky to get that compound in a form that could be taken orally.

It seems too complicated for me to manage and get it on hand?

Has anybody achieved that here on the forum?

 

Probably if somebody has anecdotal cases on hyperacusis vanishing after Ebselen treatment, it is Sound Pharmaceuticals as they have had Ebselen in clinical trials for hearing conditions for nearly ten years.

Has someone maybe got a contact at Sound Pharmaceuticals?

 

As far as I know, it's only been in pre-clinical and trials for Meniere's. Not sure how common hyperacusis is in that population.

 

I had just seen this Phase II trial which started in 2011.