I wonder if anyone saw a newsclip yesterday about this drug, currently being studied in England. It apparently is showing promise in that it attacks the tangles in the brain, not just the plaque. The clip showed a woman who had actually regained some of her cognitive functioning. They said it would likely come to North America for study by next year. There is a link to an article in the Chicago Tribune and if I can figure out how to post it here I will, otherwise I will forward to Joan an email from my son containing the link.
The article I read said that it did not improve memory, but stopped the progression of the disease, so someone in stage 6 would stay there. This brings up the question as to what stage would be too late to use the drug. It probably would be an individual decision - another decision we caregivers would have to make. Also, it is only in Phase II study, so will not be available for several years, if at all.
Inge, I read that article. The woman it mentioned actually improved. Her mmse score was almost back to normal after taking it. Attacking the tangles sounds more reasonable because they've found plaque in the brains of people who didn't have Alzheimer's. The plaque may not be the cause. This is exciting but will it be available in time for us who have spouses in moderate stage and declining and especially those in late stages.
I have a friend who was actually at the conference in Chicago this week....he has a wife who is Stage 6/7 EOAD. He has studied this disease very diligently and has kept up with all the advances. The researchers at the conference talked about some "good" drug protocol in 10 years, but one researcher who he knows personally, said that realistically they are about 15 years away. Who knows?
I have just review several of the studies presented at the Chicago meeting. I did not see anything that looked very promising. There were many problems with the drug, Rember, dealing with the way it was studied, the lack of any published data, and the fact that it goes against all other theories on the cause of AD.
I was also interested in the number of papers on things that will prevent, or cause, AD. Being married reduced risk of AD. Being single, or particularly divorced or widowed in middle age increases risk of AD. Use of ARBs (for blood pressure) reduces risk. Use of statins helps. Etc, etc, etc. I wonder about these since my wife (of 54 years) is married, has not been widowed or divorced, is on an ARB for blood pressure and is on a statin. She also was an avid fan of cross-word puzzles. According to all the reports she did everything possible to avoid AD (without knowing she would get it), so why did she get it? Obviously, the researchers are dealing with large populations studies, which have little to do with the individual patient.
Marsh-isn't it frustrating that research doesn't seem to be going anywhere. But there is always hope. I remember when I was a student babies with staph pneumonia would come into our unit and die. Suddenly Kantrex started being used and we didn't lose another precious baby. Do you think some day we will wake up and a new drug for AD will be available-and it will work? How's the knee.
I was at a support group the other day, at an institute that tests various AZ drugs; many of the people there have someone in a trial. My husband is not. But they were distressed, because the trial had ended, the drug had been sold to another company, and here these people were who thought the drug was helping and now they can't get it any more. I hadn't really thought of that likelihood; my husband was really too far into Stage 6 to be considered, but I do feel sorry for them. I don't know the name of the drug, possibly Flurizan, but that says for "mild" and these people's family members certainly don't sound like they're in the "mild" stage.
Marsh, you may be interested in the thread beenthere just started -- What do YOU think causes AD -- on whether AD is a single disorder or a family of syndromes. Your wife may have done everything "right" as far as epigenetics goes (but maybe not ... how many factors are out there, or combinations of factors, that could eventually cause the critical threshold to be reached?) but, perhaps, is one of the unfortunate people who was exposed to the wrong pathogen at the wrong time...
I found it interesting that a highly-placed and presumably knowledgeable NIH director was extremely excited about Rember. But I couldn't tell whether the director thought the results were spectacular, or was excited simply because they showed that going after a new "target" had potential.
bluedaze, when we moved to Boston the doctors at Children's Hospital woke up one day and found that they had one patient who had survived childhood leukemia for 5 years, and a bunch just behind him with 4+ years. They had just been working on the idea if they could just keep the children alive for a little longer something would work, and it did.
At some point something like that will happen with dementia. At this point they already know that a combo of two drugs works better than either of them alone. Maybe all that is needed is the third part of the puzzle? Or maybe what is needed is a really early, and CHEAP, test so they can stop the disease dead in the water at such an early stage that life just goes on normally? Cheap so you just give it to everyone once a year starting at Age 35. And a normal life because the combo drug is something generic that you give out whenever that cheap test says it is time to do so.
Starling, I'm eagerly waiting for that cheap drug that they give to everybody starting at age 35. Then all of us will be mentally alert until we drop dead of something else. I had to laugh at that one.
Everyone, I just went to the cbs.com video section to look at the fat cat video and spied an AD video - the first half is of "new approach" but the second half is a couple, 65, and the wife has AD, and she describes what she can still do. It brought tears to my eyes. Her loving husband sitting beside her throughout the interview, and knowing what he is facing in the years ahead.
Dazed, I was actually talking about a cheap test, but hay, miracles happen. It is too late to start any of that for my daughter. She won't see 35 again, but my grandson will. I can dream of a miracle test and drug. <grin>
What was interesting about THE FORGETTING was that what they were really looking for was both my cheap test and my cheap drug to give people very early on so dementia doesn't actually start. How interesting.
I just read something about Rember. And having watched THE FORGETTING it is obvious that this is one of the new generation drugs they were talking about on that program. It won't do anything for any of our LOs. It won't be available soon enough for them. But it just might save our children, and if so, that is good enough. What the drug is targeted to do is stop the process that causes the damage that results in the losses of memory and function. Give it to someone in the early stages of the disease and you basically don't have dementia. Just a disease that requires a drug to control it for the rest of your life, like low thyriod disease. No big deal.
Even if this particular drug doesn't work out, there are others like it in the pipeline. Of absolutely no use for my LO who has lost too much already, but if he was earlier in the disease I'd be searching out a trial on this one.
I am also hoping for some miracle drug for my children or if not them my grandchildren. My husband's maternal grandmother was around 70 years old, his mother was around 65 & now husband was 52 when his memory started to decline. Will one of our sons or both be in their 40's. I pray this hell of a disease will end with my husband.
As someone said, it will probably be a totally different cause than where they are focusing now. It could be the tangles, not plaque, glucose problems or whatever. Could be different kinds of AD with different causes. Some could be a diabetes 3, plaque buildup, tangles, or something not even yet known. Lets just pray it is soon. For us where my hb is still in MCI, there is hope for a cure. He did decide not to try the infusion or other drug they are testing. He didn't like the idea that if it was working, at the end of the trial he would be left without something that worked.