It won't end this year - maybe next . I am being evaluated to participate the study in February in W-Salem, NC. They are still accepting people for it all over the US. I hope I don't get the placebo.......................
HERE IS THE LINK SPI-1005 for the Treatment of Meniere's Disease - Full Text View - ClinicalTrials.gov
I was accepted in this trial Thursday, I started the drug (or a placebo ) Friday. I take the pills for 28 days. I go back and am evaluated for two months after stopping the pills. I start the drug after the second evaluation ( the 3 month mark from the start). I will keep you posted.
Thanks so do I . Even if I don’t have the drug I can do 3 more months, I’ve been putting up with this shit for 4 years.
if it works, can‘t we just take glutathione? I think Ebselen is a glutathione imitator, so theoretically glutathione should work too, isn‘t it?
I don't think so, if that were the case, a pharmaceutical company and years of trials would not be necessary, since glutathione can be tested directly by anyone. Glutathione may help, but it is not the same as SPI1500. It is like saying that taking cocaine one does not need painkillers.
Well we have a bunch of snails running our FDA, so who knows when we can even get it in the US. Take Betahistine for example. It is proven to work and I and others could not function without it so why hasn't it been approved here ?
Actually the efficiency of Betahistine is by far not proven. In Germany they did a long term study with MD patients and they found that it doesnˋt work better than placebo. I don‘t want to say that it doesn‘t work because apparently for many people it brings relieve, but it is discussed controversially. And maybe that’s the reason why it is not approved in the states. Here is an article written by a doctor, who has MD. It‘s in German but maybe you can use google translate =) https://www.tinnitus-liga.de/media/tf/Kommentar_Betahistin-Studie.pdf
There is nothing approved of for Meniere that is clearly effective. But it has quite a few cases of people getting better and it is a very, very safe medication with hardly any side effects. Therefore, it makes no sense to deny patients the opportunity to try it, at least before surgery. Let's hope that 1005 passes the final trial and soon we have a new drug that also seems to improve all symptoms, not just vertigo. Imagine recovering 20db of hearing? craziness.
I am at my 14th day of taking the drug/placebo. Since I am only taking this for 28 days I have to assume I got the placebo as there is no change in any of my symptoms. (my vertigo is under control with Betahistine). I sure hope I am on the placebo -I don't want to hear the drug is not working. I am not sure exactly when I will find out for sure but I return to the clinic in March. More to follow............
If it is placebo it is good news (for the clinic trial) that you do not have improvement. So it's probably a placebo. Cheer up!
The same -no change in my symptoms. Today I have absolutely maddening tinnitus -I call it suicidal tinnitus. I go back to the clinic a week from this Friday. I hope to find out I got the placebo . Thanks for asking.
@yellowboy - The sensory hairs in the inner ear die as part of the hearing loss process. I understand that this trial medication helps the sensory hairs in the inner ear regrow. That process may take some time & thus the trial medication does not bring on quick recovery but works gradually. I would have love to have been eligible for the trial but had an endolymphatic shunt placed in 2019 which disqualifies me. So sad... I'm sorry you had a bad tinnitus day. My MD started w/ that kind of tinnitus. It made me feel crazy. I sympathize.