How is the drug in the Menieres drug trial SP1005 working for you ?

is this another drug that will be called a "failure" just because it doesn't work for every single patient (I say that as an exaggeration)? The standards for drugs really need to change. Meniere's is cray heterogenous and its contributing factors are too, so it stands to reason only some patients would do well any one particular drug

 

I hope that's not the case, but I also understand that it has to have statistical evidence that it works and that it meets the duty of care as being relatively safe. For what it's worth, my belief is that it's helpful to me, not because it's something magical as far as changing my hearing, more so because it's a new and powerful antiinflammatory. Everything that has helped me in my journey is without fail something that helps with inflammation.

 

Well, those of us that have seen some improvement while on the trial drug will know soon enough what roll the drug actually played with our issues. I'm off in July. I have been told that as soon as you stop taking it, the benefit if any, diminishes as well. Another reason that I am getting prepared for the Betahistine. FYI: the hyperacusis sensitivity crashed for a week or so. I was told that some of us can have issues caused by Vestibular migraine along with Menieres. Never had a headache in my life, but have seen a big difference eating anti-inflammatory & Vestibular migraine friendly foods. I am over taking tons of supplements other than the basics like C & D.
I have made several attempts at communicating with Sound Pharmaceuticals (SPI-1005). Not happening...
So, all of that said we shall continue to wait and see. After July, I will definitely have some input once off the drug.
Take care and have a blessed day!

 

It's a small data point but I was actually off of the drug for two weeks in January due to complications from another illness. During that time the perceived benefits that I've had remained, I wouldn't have even known that I wasn't taking it. It's just two weeks though so who knows how long the effects last.

 

Interesting! I am actually looking forward to being off the drug for this very reason. Do not get me wrong, I want to keep taking it! Just like to know the long term outcome. As I said, soon enough...

 

I also feel that the dose we're taking likely on the high end. I have no medical basis for my opinion but it's quite possible that the drug can be effective at lower doses.