According to the clinical trial data, you have to take the drug for 28 days, but after that there is a 3-month follow-up to see how you progress. So it is possible that if it is not a placebo there will still be time for you to notice an improvement in symptoms such as tinnitus and deafness. Dizziness and dizziness have you not noticed any improvement?
I can't say how or if it affects my vertigo as it is 95% under control with Betahistine, I have 1 mild episode about every 3 months. I can stay on the Betahistine while I am in trial. I did not read anything about the trial other than my participation requirements until the last couple of days. I wanted to go into it with an open mind and also did not want to get my hopes up. I am now reading about it and continue to hope I got the placebo. I go back to the clinic and stop the drug/placebo in about 10 days. Time will tell.
No change in my symptoms. I turned in my leftover capsules Friday to the study clinic along with some paperwork. I received a full exam, which includes a hearing test, blood work and doctors exam. I return for another exam next month and again in May. When I return in May I will get the actual drug, and be able to take it for a minimum of 6 months. They will not tell me what I took from the study bottle recently until the study is over. The suspense is killing me (literally). Thanks
The good news is that yes or yes, you will get the medicine in May and then you will know if it really works and you can tell us. If you can, ask them if you will be able to buy more after 6 months and at what price.
No, they determine how long PAST the 6 months I can get it and here in the US no one can legally purchase any drug that is not FDA approved.
I’m in this trial at the South Carolina location. I’m about 1 month ahead of yellow boy in my time in the trial. I received the drug/placebo in January. I’m pretty sure I received the placebo, as it did nothing for my symptoms, let’s hope it was the placebo anyways. Returned last month for my follow up evaluation and I am returning next week for another. There is a 2 month washout after you receive the drug/placebo. the following month in April I will receive the drug for 6 months, possibly 1 year. MUSC did tell me that they are looking to wrap up the study as soon as possible. They are still recruiting so if you’re local to there or have the means to get down there, they can still enroll you. I’m sure same scenario for other locations. They also told me that it’s a possibility that the drug is FDA approved in 2024. I’ll post changes/results end of April once I’m on the actual drug.
it will be interesting comparing notes. Yes, I hope we both got the placebo or this drug is worthless.
I was accepted today. I live in Western NV, so the closest is Roseville, CA. My appt is the 2nd week in April. 2 hour drive over the mountain, so not bad at all! They told me they have a few people that fly in for there appointments. Looking forward to getting started! Yellowboy: Big thanks for posting the link!
Congratulations , at my clinic in NC they have room for 50 and only have about 35 people and I think it closes soon.
I was talking to the clinical research coordinator where I have my appointment next month. She told me April 30th was the last day for new trial participants. She has 8 slots left if anyone is interested in going to Roseville, CA.
If you’re on antivirals do you have to stop them? I looked at the study inclusions and exclusions and I don’t see any direct mention, and I’m not sure if the antivirals that we take are typically consider to be too toxic.
I don’t believe so, but I can’t say for sure because I’m not on any. They did tell me they won’t have you stop anything that is benefiting your Ménière’s.
I’m in Canada so I don’t know if I would be accepted, but I feel so strongly about this that I might take one for the team; knowing that statistically when you combine the success rate of the previous trials with the chance of getting the placebo, it might not help me at all.