Any news about SPI 1005?

I don’t think many people know that. It still needs to get through the phase 3 trials which won’t finish until August 2024 at the earliest.

 

Isaiah.
Hey, I totally get it. A few years ago, I would have opted for surgery if my ENT recommended it. I was in chaos and wanted it stopped. My ENT never gave me the option. I started doing my own research on anything and everything Meniere's as I wasn't getting info from the specialists. I think I stay strong with the support of my wife and church family. If SPI-1005 doesn't do the trick, I will attempt to start antivirals.
2 hours South, huh? Close the way the crow flies!

 

I am thinking that until this drug gets through the last phase of trials, we will have no idea of costs. Here in the States, drug costs have soared. As this will be the first drug for Meniere's, I am guessing it will be a bit pricey. Who knows.... I hope and pray it is affordable to all. Anyway, just my two cents.
Have a blessed day!

 

I don't care what it costs as long as it works, and I can get it soon after the trial endS. I would sell my house, give most of my money away just to have peace and quiet and hear a normal conversation again .

IF YOU HAVE YOUR HEALTH .......................

 

Yellowboy,
Myself, and I bet the majority of Meniere's sufferers would agree with you. I was responding more to IvanNew's questioning on cost and when. I am planning on it being expensive. If it's not, that would be awesome. But the best, most important thing is the fact that it's very close to becoming a reality! And I'm super stoked to be in phase 3 at the end. Would it not be awesome to finish up our trial with successful outcomes, then fill the prescription! I am thankful that you posted up the contact info and I was able to get in near the end. Barely made it, haha. Good looking out Brother!
All the best!

 

Yes I agree as well. WE HAVE HOPE ! I have been so depressed I am becoming a recluse, I don't know how the younger folks on here or others who had it longer than me are coping. I am 71 and have had it only (?) 5 years but it has brought me to my knees. I am sure it will be expensive until it goes generic but it's all we (will I hope) got . I hope the company works with people financially who may not be able to afford it. This drug is so important in my opinion it will keep suicidal people like me alive.

 

I guess what I don't really know is what the full trial entails. The 3 month period of the trial is supposed to be done sometime this summer. Then there's the open label portion where people will get the drug for 6 or 12 months to see how it is tolerated longer term. Does the FDA require the results of this long term, open label portion? I'm not an expert so I don't know. Regardless, I fly to Boca Raton tomorrow - the journey begins!

And thank you for posting the info about this trial. It was enough to get me thinking and to decide that I should give it a shot. When I heard about it many months ago, I thought, no they'll never accept a Canadian, but here we are.

 

Silicon Valley, the land of modern tech is my home base. Too bad with all the great innovation & research that goes on here, no one has come up w/ a cure for Meniere's
Agreed that family & spiritual support are critical when dealing w/ things like this. I will say my husband & son do razz me about my intermittent hearing. Sadly, I think I need to visit my ENT once again as I'm starting to struggle a little w/ hearing out of my good ear. I've long joked that my deaf ear is my "God ear". His voice is the only one I can hear with it.

 

I'm excited for you MrE!! Looking forward to your posts once you've gotten going in the trial. Wish you safe travels tomorrow & going forward.

 

Totally understand your position, Yellowboy. Been struggling a bit myself lately. Trying to pull my head out of the fog & back into the sunshine. My MD onset when I was 59 & very active. Not being able to hear well has slowed me down considerably. I am very thankful for what I can hear though. Maybe what I can't isn't worth listening to?!

 

It's my tinnitus that is driving me crazy. I want to scream sometimes (and have). I have scared my dog, then I regret it. I told him no matter how bad it gets I will never leave him. Not sure what I will do after he is gone Hopefully with this drug I won't have to worry about it.

 

Safe Travels MrE and welcome to the US, hopefully these trips will be best "vacations" you have ever taken !

 

Hi, just read about all this trial stuff. What and where is it? Is it over? Would love more information

 

Thank you! It took me waaaaay longer than it should have to get here, but I made it. Appointment is tomorrow and then I head home later in the day with the real thing or a bunch of placebo. I’m going to go with the former.

 

I have been getting steroid shots in my eardrum by Dr. Gacek and am on Acyclovir 800mg day for now. I have had some relief, from nausea and face pain. Have a few real good days and then its back. I don’t have vertigo thank God, but have a lot of balance issues. Outside is best, inside there are too many things to focus on. My doctor wants to do an exploratory in the ear to see what’s going on since we have gotten the most out of the shots and no further improvement. Possibly putting acyclovir in the place of inflammation instead of just the steroid through the eardrum. Side effects are suppose to be few with good results especially for tinnitus (I don’t have that usually), but a rare side effect is permanent imbalance. My worst problem is imbalance. Praying about it.

 

Hoping you got the good stuff! IS there still room to get in the trial???

 

Hoping, I believe most trial clinics are only accepting applicants until the end of the month. Of all the places I contacted, only 3 got back to me. One said they were only recruiting locally, the second said they met their quota and the third said “yes, as long as you commit to coming”.

 

Here are the details. SPI-1005 for the Treatment of Meniere's Disease - Full Text View - ClinicalTrials.gov