Anyone out there with a LO in a Dimebon Study? Are you getting Good, Bad or No results? If you got Positive results, how long did it seem to take? We have my Mom in a study which allows her to remain on Aricept and Namenda. The first 12 weeks we were hoping like crazy that she was on Placebo, since all we saw was a bigger decline. Now she's been on REAL Dimebon for just over 3 weeks and we have not seen any additional changes or improvements... so wondering what others have experienced. Really hoping that we did not hurt Mom further with this study since she might have been on the real thing all along. Trying to decide now if we should continue Dimebon study or go looking for the next "Magic Bullet". How long should we give the drug, to see if improvements start? Also worried that if the Dimebon IS helping her in some way not noticable to us, we could cause bigger decline by pulling her off it. Mom did not complain of any dry mouth during the initial 12 week study - and has not had that symtom since starting the 2nd part of the study, where we know she is now on Namemda. (Apparently this is a side effect that about 25 percent of Dimebon users report.) Anyone trying Methylene Blue (Rember)? Or have any other New Drug suggestions? All thoughts and results appreciated.
My wife, who is 63, will enter a Phase III clinical trial at a hospital in NYC with Dimebon in January. She's been on Aricept since July. We don't expect ... or I don't expect ... any tremendous positive improvement but I am certainly hopeful of some minimum improvement, which I would define as a slowing of declines. I have not observed any positive improvement since she started on Aricept; in fact, she's fallen off 2 major cliffs since then. But, of course, who knows if things would have been even worse had she not been on Aricept?! We're committed, however, to the year-long study with Dimebon.
My DH was in a clinical trial and has just been put on the real drug. He is just starting the lower dosage and will increase to the full dose in a week. I'm trying to think positively. (VBG)
Hello Acvann & Patsy, Please keep us posted on what you notice as the trials progress. Definitely think POSITIVE and keep fighting the good fight! - Kelly
My wife is now starting her 6th week in the CONCERT Dimebon Phase III clinical trial based at Mount Sinai Medical Center in NYC. This is the one for those on Aricept for at least 6 months, and the study will last one full year. Readers should be aware that there are several ongoing Dimebon trials ... some for those not on any other AD med for the prior 6 months, some on Aricept for less than 6 months, and a new trial has just started for those on Namenda. I can't speak for the other trials, but my wife's CONCERT trial is a random double blind study ... some are receiving Dimebon at 20 mg, some at 5mg, and some are receiving a placebo. Neither the docs nor the patients know who is getting what. I do not see any positive effects yet, but my wife 'feels' that she is receiving the actual med because she believes that she is having more lucid moments and fewer foggy moments. According to the principal researcher for this study at Mount Sinai, no previous participants noted any positive effects until sometime between the 6-10 week point. So, maybe I will see some positive signs of improvement during the next 2 months. Maybe not. Later on during the study, objective memory testing will confirm or reject improvement ... at least as measured on the tests. Of course, there are 2 other significant factors to be considered: 1. The placebo effect can be VERY strong. So, even if NOT receiving the actual med, if one BELIEVES he/she is receiving the actual med, often that alone can lead to improvement. 2. It's impossible to 'prove a negative.' What I mean by that is ... let's say my wife IS actually receiving Dimebon, and yet a year from now neither she nor I notice signs of any improvement. That observation would still not mean that Dimebon is ineffective. Why? Because had she not received it, it's possible that she would have been a lot worse off! We'd never really know one way or another ... as I said, it's impossible to prove a negative!!
So, she'll continue in this study for a year and then ... we'll see. Should we be lucky enough to see a slowing of her decline or a temporary reversal of memory loss, that would be something to shout about!! And if it turns out that she's only been getting a placebo but she thinks she's been doing better, that's also a plus. Either way, we're very happy with the study to date. We've now made 4 visits to Mt. Sinai where she has been seen by a neuropsychiatrist, had blood work, EKGs, checks, etc. ... all at no cost to us. They even reimburse us for the Aricept during the study!! My wife is now being seen and will be seen regularly by the same doctors in a highly respected ADRC setting ... examined by experts in the field of AD who answer any and all questions we have during each visit. In my opinion, this alone makes this yearlong study worthy of participation!
I don't know yet if this is in our area as there are no teaching hospitals locally. We are about half way between LA and SF. I was wondering what the side effects might be of this product.My DH is on Exelon and he was put on Namenda but it made him so dizzy the Namenda was halted. I really can't tell if the Exelon is doing much of anything..I kind of doubt it but if not for this, who knows how fast the misfires might be and other problems too.
None of the potential side effects are major, one of several reasons why we chose this particular trial. You can look up Dimebon online and read about potential side effects. My wife, fortunately,has had no side effects these first 5 weeks.
Mimi ... check the clinical trial website, locate the Dimebon trials, and see if there is a location near you. I know for a fact that they are still actively recruiting participants because so far every result has been positive and they want as much data as possible before seeking FDA approval which, if all continues well, they will do by this time next year if not sooner! Feel free to email me directly anytime youwant re Dimebon.
Go to my home page - www.thealzheimerspouse.com. Look on the left side of the website where all the resources are. Scroll down to Clinical Trials. When you click on that, click on "results on map" tab. Then click on the United States. Then click on California. Scroll down and click on the Dimebon study. Then scroll all the way down and click on "show 101 study locations". Scroll down to United States, California, and there will be a list of places recruiting. Above that list are some phone numbers you can call for information.