you have to go on that site and do a search. Unfortunately they seem to be more in the first and second stage of the trial, not sure why.
There are a few but the one I'm a member of is Meniere's Disease Support Group | Facebook There are reports scattered throughout the group so I would search for SPI-1005 within the group and see what people have to say.
I think it's about time that I provide another update. I've been on the drug for about 5 weeks now and generally I would say my results have been positive. The biggest change remains a dramatic decrease in hearing distortion and while I doubt I have a measurable improvement in pure tone hearing, it's a welcome improvement to have a better quality of hearing. I can tolerate certain frequencies that drove me crazy in the past - in fact I even listened to bass heavy music just yesterday. The other improvement is in general ear fullness and feeling of "lightness" in my head. I've mentioned that I have eustachian tube dysfunction when I swallow and this has dramatically improved. In the past it would hurt 80-90% of the time when I swallow and now it's inverted, where it only bothers me 10% of the time. One day I even went half a day completely free of discomfort. Beyond these items, tinnitus remains the same. I have noted some very, very light dizziness that started about 1-2 weeks ago. It doesn't impact me at all at this point.
Good news MrE! Glad to hear the issues are improving. Will be interested to see what the next few months bring.for us all!
Yes, I'm cautiously optimistic. I'd say the bulk of my improvements happened within the first 3 weeks, but I also know it takes time to heal. If SPI-1005 is taking out the inflammation, it's going to take time for more systemic issues to improve, if they are to improve. I'm looking forward to being on this for 5 or more months to come. Has anyone read stories of anyone being on it longer than 6 months. There was talk in the beginning that they might provide the option to go beyond 6 months, but I haven't heard any reports thus far. I know there are people that are beyond 6 months at this time, I just haven't seen any stories.
My clinician told me that I could get it for a year if I want, that in most cases it will be approved. She also told me some companies will allow patients to stay on a drug if it is helping them long term but that must be approved on an individual basis.
I asked about it where I go. I was #34 so they said probably no extension for me as I came in at the end. Trust and believe I will ask at the 6 month mark Haha! Also, seriously considering going on a more antiinflammatory eating plan and see if that helps. Not that I eat bad now, but still eat some whole grains and dairy. Anybody doing antiinflammatory foods with SPI-1005?? Very curious.
I know they had quite a few people enroll after me at my center even though I enrolled just two weeks before enrollment closed. I don't want to get ahead of myself, so we'll cross that bridge when it gets to the 6 month mark. As for anti inflammatory foods, I haven't targeted anything specific but I have been trying to eat cleaner since October. That's when I had my last vertigo attack, but I have no idea is the two are just correlated or if it's cause and effect.
If anyone does not want to continue taking it, let me know and I will pay them to send their supply to Europe.
When I complete 90 days in October, I will post up on the results. Too soon to speculate on what it is doing/not doing. At this point, I am cautiousely optimistic. Stay tuned, and God bless!