Sound Pharmaceuticals (SPI-5557 & SPI-1005)

#931
ThomasF said:
I feel that the fact that tinnitus has been reversed in mice means it could potentially be reversed in humans. While that doesn't necessarily mean Ebselen will have the same effect in people, it's still a significant development.
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Anecdotal, of course, but I came across someone on Reddit who claimed to have participated in the Ménière's trial. While they were pleased with the reduction in vertigo, they unfortunately said it had done nothing for their tinnitus. So, for now, this is just a small step forward.



I have my suspicions that this drug might be useful to some degree for some of us, as it clearly reaches the right areas. I'm really, really hoping it helps with TTTS, hyperacusis, and noxacusis—maybe even with reducing early-onset tinnitus levels or something similar.

I believe tinnitus will be treatable, if not curable, within the next 15 years. And yes, Ebselen may be the starting gun. If they could develop the equivalent of paracetamol for a bad headache—something that could smooth out the pitch and level on difficult days—that would be incredible. The mental health benefits and overall improvement in quality of life, just from knowing there was even the slightest safety net, would be unprecedented.
 
#932
Can anyone tell me the current status of SPI-5557? This is for hearing loss, right? Is SPI-1005 also for hearing loss, or is it for something else?

I have hearing loss, and with all the different research happening, it gives me hope that one day I might be able to hear like a normal person. If that happens, maybe my tinnitus will decrease or even stop altogether since the nerves would be functioning properly.
 
#933
I found another Reddit post from someone in the trials (it seems there was no NDA). They felt there was some benefit to their tinnitus levels throughout the day while taking it, unlike the person I mentioned earlier. For what it's worth, their experience seemed more positive.
LovableGamer said:
Can anyone tell me the current status of SPI-5557? This is for hearing loss, right? Is SPI-1005 also for hearing loss, or is it for something else?

I have hearing loss, and with all the different research happening, it gives me hope that one day I might be able to hear like a normal person. If that happens, maybe my tinnitus will decrease or even stop altogether since the nerves would be functioning properly.
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SPI-1005 is currently indicated only for Meniere's disease to reduce vertigo attacks, slow hearing loss, and reduce tinnitus. There is some hope that it might have benefits off-label or after further investigation, but there are no guarantees.

You've mentioned Turner syndrome in your other posts. SPI-1005 almost certainly won't reverse any hearing loss you've already experienced, but there is a chance it might help prevent further progression depending on the underlying pathology. It is also being tested for the prevention of acute noise-induced hearing loss, and since it works for Meniere's disease as well, that suggests a possible protective effect.

As for SPI-5557, there has been no public progress as far as I'm aware. I believe the focus has been on bringing SPI-1005 to market.

I do think advancements will continue, and your hearing may eventually be restorable, but it could be a while before such treatments become available—likely not until 2035 or later. Hopefully, at least a tinnitus treatment will arrive much sooner.
 
#934
Scruffiey said:
I found another Reddit post from someone in the trials (it seems there was no NDA). They felt there was some benefit to their tinnitus levels throughout the day while taking it, unlike the person I mentioned earlier. For what it's worth, their experience seemed more positive.

SPI-1005 is currently indicated only for Meniere's disease to reduce vertigo attacks, slow hearing loss, and reduce tinnitus. There is some hope that it might have benefits off-label or after further investigation, but there are no guarantees.

You've mentioned Turner syndrome in your other posts. SPI-1005 almost certainly won't reverse any hearing loss you've already experienced, but there is a chance it might help prevent further progression depending on the underlying pathology. It is also being tested for the prevention of acute noise-induced hearing loss, and since it works for Meniere's disease as well, that suggests a possible protective effect.

As for SPI-5557, there has been no public progress as far as I'm aware. I believe the focus has been on bringing SPI-1005 to market.

I do think advancements will continue, and your hearing may eventually be restorable, but it could be a while before such treatments become available—likely not until 2035 or later. Hopefully, at least a tinnitus treatment will arrive much sooner.
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Thank you! It would definitely be great if it could at least help protect my hearing from getting worse.
 
#935
Scruffiey said:
I believe tinnitus will be treatable, if not curable, within the next 15 years. And yes, Ebselen may be the starting gun. If they could develop the equivalent of paracetamol for a bad headache—something that could smooth out the pitch and level on difficult days—that would be incredible. The mental health benefits and overall improvement in quality of life, just from knowing there was even the slightest safety net, would be unprecedented.
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Could, would, may, hoping that… Looking at where my career and life will be in 15 years.
 
#936
Fightthearmy said:
Could, would, may, hoping that… Looking at where my career and life will be in 15 years.
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I don't like it either. I wanted a cure yesterday. But I'm being realistic based on the current state of research, the time it takes to develop treatments, run trials, and bring them to market.

Personally, I plan to enter as many clinical trials as possible if I think they have a chance of helping, because I'd love to regain some semblance of my old life much sooner than 15 years from now.

Until then, despite the horrible days when I come here to vent, commiserate, and feel scared, I'll have to do my best to accept my situation and make the most of it—while hoping I don't get worse.

Then again, a huge breakthrough could happen tomorrow. Nothing in life is certain. Whatever happens, happens.
 
#937
Scruffiey said:
I don't like it either. I wanted a cure yesterday. But I'm being realistic based on the current state of research, the time it takes to develop treatments, run trials, and bring them to market.

Personally, I plan to enter as many clinical trials as possible if I think they have a chance of helping, because I'd love to regain some semblance of my old life much sooner than 15 years from now.

Until then, despite the horrible days when I come here to vent, commiserate, and feel scared, I'll have to do my best to accept my situation and make the most of it—while hoping I don't get worse.

Then again, a huge breakthrough could happen tomorrow. Nothing in life is certain. Whatever happens, happens.
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I appreciate the effort you've put into researching this drug. However, I regret getting involved with a prediction that spans such a long timescale. Maybe I just don't see the connection to the topic. After personal setbacks—such as not completing my education when I was younger—it's clear that I will face significant disadvantages in pursuing the career I always wanted and achieving financial stability.
 
#938
Fightthearmy said:
I appreciate the effort you've put into researching this drug. However, I regret getting involved with a prediction that spans such a long timescale. Maybe I just don't see the connection to the topic. After personal setbacks—such as not completing my education when I was younger—it's clear that I will face significant disadvantages in pursuing the career I always wanted and achieving financial stability.
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Hey,

I have had massive personal setbacks. At this point, I am in my mid-30s and have already lost half of my life to issues beyond my control. I was literally at the finish line, ready to start the new life I had dreamed of for ten years. It was finally going to be my time—then this ugly disease knocked me back down to a place even worse than before.

Money? Well, I had hoped to finally find someone to share my life with, but at this point, I would settle for a single friend nearby to meet up with. We have all lost something to this, and we need to try to appreciate what we do have.

Besides, there are other avenues for education and financial stability that can be pursued from home. It may not be what you had planned, but life does not always go the way we expect. Sometimes, in adversity, we find unexpected good things. I hope that happens for both of us.

As for this drug—do not give up on it completely. It may still have some benefits. With its potential protective effect, maybe it could make a trip to a noisier place feel like less of a risk for us. That would be a start.
 
#940
Fightthearmy said:
I appreciate the effort you've put into researching this drug. However, I regret getting involved with a prediction that spans such a long timescale. Maybe I just don't see the connection to the topic. After personal setbacks—such as not completing my education when I was younger—it's clear that I will face significant disadvantages in pursuing the career I always wanted and achieving financial stability.
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Never give up.

I was born prematurely and never had a father. My mom raised me, and we were dirt poor. I was kicked out of high school, then drafted and sent to Vietnam, where I saw combat. After I got out, I became an alcoholic. But something changed—someone at the unemployment office helped me get into a job training program. I completed it, sobered up, and eventually built a good career in county government. That allowed me to buy a modest home and raise a family.

Later, I retired, got divorced, and ended up homeless, living in my car. But I clawed my way back up by taking labor jobs. At 68 years old, I am stable again. I have a nice home, and except for tinnitus and some arthritis, I am living well.

Have faith. You will succeed.
 
#941
Joey72 said:
Never give up.

I was born prematurely and never had a father. My mom raised me, and we were dirt poor. I was kicked out of high school, then drafted and sent to Vietnam, where I saw combat. After I got out, I became an alcoholic. But something changed—someone at the unemployment office helped me get into a job training program. I completed it, sobered up, and eventually built a good career in county government. That allowed me to buy a modest home and raise a family.

Later, I retired, got divorced, and ended up homeless, living in my car. But I clawed my way back up by taking labor jobs. At 68 years old, I am stable again. I have a nice home, and except for tinnitus and some arthritis, I am living well.

Have faith. You will succeed.
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I was skeptical of the idea that a treatment could return you to the way you were before developing tinnitus. If you are satisfied with your job history and have other things in life that matter more, then maybe it could feel that way for you. But for anyone in my situation, only in the movies, my friend.

I am literally going to have to aim lower, much lower. I will probably be twice the age of everyone else by the time I finish my studies, with a gap in my résumé because I could not work full weeks.

A treatment option that becomes available after 10 or 15 years is, to me, about as valuable as no treatment at all. It makes no sense that I cannot access Retigabine or receive the kind of treatment Dr. Pulec's patients once did.
 
#942
I have noise-induced hearing loss at 4 kHz and tinnitus at that same pitch. However, there is definitely an inflammatory component, because when I was taking very high doses of Prednisone (80 mg per day), my tinnitus almost completely disappeared. I remember being outside at night in a quiet place and not being able to detect the tinnitus at all, something I have not experienced at any other time since my onset seven years ago.

That said, you cannot stay on doses that high for more than a day or two, and smaller doses, even 60 mg, did not have the same effect. Still, if there is a new drug that specifically targets inflammation in the ear, it gives me hope that it could actually help.
 
#944
I have been also tracking the progress of the clinical trials and supposed FDA Approval application. I am 48yrs old, live in the UK and was diagnosed with unilateral Menieres Disease in 2020. For those of you that also have this condition, you will appreciate how debilitating it is and can be. I'm not sure if it is stress induced due to recent heart surgery (ASD closure May 25), but my tinnitus in particular is almost unbearable at present. Although I was diagnosed with unilateral MD, I fear things are now moving to the other side as I have started getting pulsatile tinnitus in the good ear, but not yet with any hearing loss on that good side. I am clinging on to some kind of hope that Sound Pharma or other companies have come up with some kind of positive relief or help with acute tinnitus/hearing loss.
 
#953
Just to clear this up. This can reduce tinnitus only in those with Meniere's disease. Tinnitus caused by Meniere's is exacerbated by sudden bouts of hearing loss and vertigo. It is not effective in chronic tinnitus without Meniere's.

As I understand it, it has been designated some sort of fast track; however, there is still an ongoing trial to complete. Approval seems to be about 2 years away.
 
#954
Alberte said:
English is not my first language. Does it mean that this drug, created to treat Meniere's disease, can also treat tinnitus? And if the FDA approved the product, is it available now?
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I am no FDA process expert (several on Tinnitus Talk are, I believe), but the press release mentions the pharmaceutical company next needing to prepare and file an "NDA", or New Drug Application, meaning they have some procedures/approvals still to come before the new drug is approved for patients.
 
#955
Alberte said:
English is not my first language. Does it mean that this drug, created to treat Meniere's disease, can also treat tinnitus? And if the FDA approved the product, is it available now?
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The effects on tinnitus, if any, are uncertain. FDA has decided to give the drug a special treatment, but no approval yet.
 
#956
@Alberte, some people feel like this can help tinnitus or, at the very least, keep it from getting worse. The company's CEO also believes it can help with tinnitus. The FDA hasn't approved it, but they gave it the fastest track, so hopefully it will be on the market sooner rather than later.
 
#957
Nick47 said:
I see no indication as to how SPI-1005, a systemic anti-inflammatory, could be beneficial for tinnitus.
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I do.

You nave noise-induced tinnitus and you have tension-induced tinnitus. Different things. But even if your tinnitus is mostly caused by noise, it can be worsened by tensions. (I am not good at the scientific stuff, so I simply choose to believe anecdotic experiences from people here at Tinnitus Talk. They are usually what matters in real life, anyway.) Keeping your tensions in check can limit how bad your noise-induced tinnitus gets for at least some sufferers.

You also have inflammation-induced tinnitus...

You can probably see where I'm going with this. Even if your tinnitus is mostly caused by noise, there might in some cases be an inflammatory component as well.

Like you've said yourself in other posts, there probably won't ever be a single treatment against tinnitus. In practical terms, a tinnitus sufferer will have to:

  1. Protect the living daylight out of their ears. If you can't avoid an onslaught of acoustic traumas, then no treatment is going to help. This might actually be a bigger hurdle than finding effective remedies. Look at all the people here at Tinnitus Talk whose tinnitus got worse even after they realized how critical it is to avoid further damage. How many of us would be here if we only ever suffered a single incident?

  2. Keep throwing treatments at their tinnitus until things, finally, start to improve. We are already at a point where this is doable, not for everyone, but for some. A couple of tinnitus sufferers have found relief through rough stem cell treatments despite a glaring lack of robust scientific data. Others improved from Retigabine before it was withdrawn due to blue-colouring skin. (Not sure why that is an issue. I mean, aren't there skin creams to order from Amazon?) If you dig deeper into the tinnitus forums, LLLT has helped a scant few sufferers as well. However, LLLT has the drawback that it causes spikes along the way, which inevitably scares people away.

Point is, I'm not very interested in what SPI-1005 can do against noise-induced tinnitus on its own. I am[/ interested in what it can do together with XEN1101, a possible replacement for Retigabine. Sure, SPI-1005 is just an anti-inflammatory, but it must be quite powerful to help against Meniere's disease. You can't get those effects just by taking health supplements, can you?

People on this site are suffering and will continue to do so, but with more treatment options surfacing and with more of a pile-on approach, I suspect that a path forward can be cut open for more of its members.

That's why I think SPI-1005 is a big deal indeed.
 
#958
@Vincent R, I'm all for more treatments as the Otology specialism has been stagnant for decades. I just think it's worth being practical about things. You've been here longer than I and seen the hype, then the crash.

For Meniere's disease, it is a breakthrough.
 
#959
hey said:
@Alberte, some people feel like this can help tinnitus or, at the very least, keep it from getting worse. The company's CEO also believes it can help with tinnitus. The FDA hasn't approved it, but they gave it the fastest track, so hopefully it will be on the market sooner rather than later.
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You seem to be confused about the job description of a CEO.
 
#960
It might be possible -- or even likely that it helps Meniére's patients who also suffer from tinnitus... a niche group I freely admit. I seem to recall reading that tinnitus can accompany Meniére's. But I wouldn't bet the farm on it.
 

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