I'm sorry to say that I am not surprised. These trials all seem to follow a pattern - Big news flash about promising trial; news about how well the trials are going; then BAM! - sorry, didn't pan out. I understand all the intricate scientific detail and protocol involved, but sometimes I wish they'd just wait until an actual, working pill medication is available to tell us about it. I'll post the article under the Breaking News Section on the home page. :(
It doesn't surprise me that it has not showed promising results. I really would like to see the research concentrated on prevention and identifying before symptoms relly show up. This is where Kate Mulgrew believes the answer lies and I have to agree. But then, how to you get young adults to agree to testing? I believe when my hb was diagnosed at age 38 with 'detached personality disorder' then after counseling deemed cured, that was a sign of what was to come. He would be one, with his family history, to have red flags and tested for future AD risk.
Thanks, Sunshyne. I felt so bad that I wasn't able to get DH in the trial. I thought it showed promise. Guess we'll stick with the Axona. That's one thing that does seem to help. He's been on it or the MCT/Coconut oil for almost a year now and his MMSE score is several points higher than when first diagnosed two years ago.
Another link for those of you who are following demebon:
http://www.wtop.com/index.php?nid=111&sid=1902323 I replaced the one I had under the Breaking News Section with this new one. For some unknown cyber reason, the old one is coming up blank.
Go to the home page - www.thealzheimerspouse.com - Refresh it (click the little up and down little curved arrows next to the address bar). Scroll down to Breaking News and click the first link about Dimebon. That should work. If it doesn't, let me know. I just did it, and it worked. It's the link that is imbedded in the main link that SS posted.
It seems to me that I've read something about the drug companies touting good results from certain stages of clinical trials in order to make their stock prices go up. Seems unethical--but it could explain why so many of the trial drugs have a big splash in the beginning and then don't pan out.
Oh yes, like so many others here, I've been on both boards. We need all the help we can get. It is good news that all the Dimebon trials have not been cancelled and maybe there's still hope.
Pur Neurologist told me about this last spring..and said it wasn't working.
She went on to say that often the news of a drug is filtered down from the researchers to one writer who shares it with another reporter down the line who edits it to "fit" and by the time it gets into the hands of the general public, it's much like the childhood game of Gossip.
I asked why the research and development companies didn't issue their own press releases and approve any editing.....and she said that is their intent, but once it's out of their hands, it's "out there".
I know last year when I asked our neurologist, who specializes in dementia and the research, about any of the trials she did not recommend any of them. She said if I find some supplement in research that sounds promising and want to try it, then try it. At the time it was red korean ginseng I think.
My wife and I just returned 2 days ago from a 4 week trip, undoubtedly our last major trip, and needless to say I was not pleased when checking email this weekend and reading about the Dimebon results published last week. Clare has been enrolled in the Dimebon + Aricept CONCERT trial at Mount Sinai Hospital in NYC since January. The CONNECTIONS trial, the one that published those disheartening results, was for people on Dimebon only, not Dimebon + Aricept. BUT, since I have seen no positive signs in the 9 months she has been on Aricept, nor in the 3 months she has been in the Dimebon trial ... either she's receiving a placebo or the Dimebon is not working at the dosage level she's receiving, because she has been experiencing more 'brain fog,' not less ... I've already emailed the docs at MS to raise questions about whether she should continue in the CONCERT trial, drop out and start taking Namenda as well as the Aricept, or enter a new trial with a different med that may hold some promise. I'm a realist and didn't expect any miracles from Dimebon ... though I was hoping it would slow her rate of decline just a bit. That hasn't happened. So ... althoght still jet lagged from our trip to Israel/Egypt/Jordan ... an amazing trip, by the way, and one I'm gald we took even though Clare had major difficulties remembering things each day ... I'm now waiting for a response from the MS docs. I'll let y'all know what they recommend.
Welcome home Alan! Glad to hear that your trip was amazing. I'll be interested to hear what your MD says as, what I have been reading implys that there is still hope held out for the studies which combine the drugs. I understand your frustration with not seeing results with Clare because I have had a similar experience with don in the Bapineuaumab study. I always think to myself, would he be in more serious decline without it? Guess I'll never know. Anyway, Dons on Razadyne, not aricept (he had a terrible reaction to aricept 2 years ago) and I recently asked MD if we should add Namenda. This is not being considered untill Don is out of the current study which will be in about 2 months.
In fact, Clare will continue with the study. Mount Sinai docs want to continue the CONCERT study because they feel that Dimebon results after one year may prove to be signifcant ... despite a showing of no significance after only 6 months. Apparently, during the successful Phase II trials there were few benefits seen after just 6 months but a significant difference did appear after 12 months. So, we'll remain in the trial!
Clinical trials are necessary and certainly do benefit those who take part in successful ones, however, particularly with this class of meds it is often nearly impossible to determin any real world efficacy. The package inserts for most of them tell users to look for slight improvement or "no change". In a clinical trial one cannot even be sure that it is in fact the drug that is being taken. Clinical trials are, by design, double blind. That means that neither the subjects nor the clinicians administering the drugs know who is in each group. Since the effect that one hopes to observe is "no change" or slight improvement virtually anyone on the trial could exhibit that in any particular block of time. My wife is not a participant in a trial and she presents with significant positive improvement for weeks at a time for no particular reason at all. Followed by a return to the way things were or worse. People need to keep their hopes in perspective. Not trying to shoot anyone down here, just keeping things in focus.
You are right Thunder - many here have talked of their spouses going up and down in this disease. That is why a 12 month or even 18 month trial, I believe, would not show if the drugs work. I was reading up again on galantamine the other day (my hb takes it) and in clinical trials it was shown to only help for about the first 6 months. In longer trials there was little if any improvement loss of cognition or memory. I was also reading up on Namenda and it also only showed that. The biggest reason: they can only testify as to what was shown in the short trials they have done. And - only a percentage of those taking the drugs show any improvement. I really believe this is because there are many factors that combine to cause this disease. And until they can narrow the most critical factors down, there will be little hope for the masses to be helped by any drug.
But - unless we take our spouse off the drugs, we will not know if they are the small percentage being helped by it. A catch 22!
It is indeed a catch 22. I am all for any drug that makes even a part of this disease more tolerable or less horrible. The brightest hope for the future is, in my opinion, not in a cure but in prevention. At the present time even if we could stop the disease in its tracks it would be of little help to any past a certain stage. The symptoms and signs observed in AD patients are due to the irreversible destruction of brain cells. Stopping the disease and removing the beta amyloid plaques would not reverse the damage already done and medical science is generations away from the kind of neurological regeneration that would be required to give a late or even mid stage AD patient a normal life. Prevention is by far a more viable approach not to mention cost-effective. Imagine a world where AD was no longer a threat because we were vaccinated against it like polio or tetanus or diphtheria or pertussis. There is more to be hopeful about than many believe.