I just had my 2 month check in this morning. At this point if you forced me to give my assessment I would say I experience some rapid changes/improvements in the first month and then the last has been a relative plateau with maybe some small improvements. I still want to see what my ears feel like as I have the inflammation reduced over a prolonged period of time.
Has anyone been informed when it could be on sale if the results of the study are good? Your report sounds like good news. Looking forward to seeing what this drug does at 6-12 months. Thanks for informing.
I truly don't know. I have tinnitus 24/7/52/365. When it gets too loud, I take prednisone for a couple of days which reduces the volume. I have learned several triggers so try to avoid those which seems to have helped. I had a hearing test today to get evaluated for a hearing aid. I was told I hear high pitched tones less well than last test (a year ago) & lower pitched tones better. My understanding of the spoken word has improved from 40% to 64% which I find curious because I feel like I'm hearing less well. I truly appreciated the audiologist's honesty when she told me that because the spoken word sounds garbled in my left ear, a hearing aid would only amplify garbled words coming into my ear which would be more irritating than helpful. The only medication I take is Triamterene (diuretic) & which supposedly helps prevent vertigo. Like @MrE, I haven't had a vertigo attack since last October.
This is my situation as well - in two word recognition tests on my left ear, I achieved 0% and 17%. I bought hearing aids that take the sound from my left and wirelessly put it in my right.
Howdy! I go to California tomorrow for my 90 day check up, testing and another 90 days of drug. I will post more tomorrow on results. I can say hyperacusis/sensitivity to loud noise is gone. Tinnitus and hearing have been steadily improving as well. Have a blessed day!
Just got home from the appointment and got the next 90 day supply of drug Hearing test went well. Slight improvement in bad ear in distinguishing words with background noise. Tinnitus still there but definitely tolerable now. Time will tell. Usually takes the 90 day mark for significant improvement for some, so we shall see. Praying for all that are afflicted with this chaos.
Day 150 for me on the drug today , no improvement of anything yet. I go to clinic in 30 days for more drug. Sticking it out. Clinician told me next month I can sign up for another year on the drug. If it helps me on the last day it's better than nothing !
Absolutely and totally agree! Keep going!! I had the discussion yesterday with my clinic dude in regards to extension. I believe he said that they were extending the first 100 nationwide. With me coming in towards the end, he wasn't sure if I'd make the cut. Argh. We shall see what happens. I'm just happy I got another 3 month supply! My improvement has been slow but steady. Most significant in the last month. Of course nothing is a sure thing with this crazy disease. I keep praying for ya, brother!
@Paul101, If you are asking in regards to what I posted above, it is referring to my next 90 day supply of SPI-1005 drug for this trial.
Hi, Pablo This drug is in a clinical trial, the opinions you read here are from people who are in the trial. It is not yet for sale, if everything goes well and the results are positive, it may be sold in the US in 2024. In other countries it may take longer. greetings
I really hope that they extend it for everyone. I desperately want to stay on this drug. That said, after feeling really good for almost 3 months, my hearing all of a sudden took a turn for the worse today. It hasn’t been this bad since May, here’s hoping I rebound.
@MrE Sorry to hear about the ear. Hopefully it rebounds soon. I started the B-5 /B-6 regimen 7 days ago. We shall see . I'm praying that ear of yours improves soon!
@Mark55 I'm so disappointed. I'm beside myself because I was doing so well - I was actually not thinking about this condition for what feels like every minute of my life. In fact all other symptoms are still pretty good. What daily dose are you taking on the B5 and B6? I was reading up on it last week and as far as I can tell the general dose is around 100mg of each/daily.