Medical Forum / Diseases and Disorders / Alzheimer's / August 2005
therapeutics initative letter #56: Alzheimers drugs what is the evidence?
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fresh~horses - 22 Aug 2005 23:45 GMT August 2005 issue (#56) of the Therapeutics Letter: "Drugs for Alzheimer's Disease" has just been published on the Therapeutics Initiative web site at:
http://www.ti.ubc.ca/pages/letter56.htm
In this Therapeutics Letter we summarize the currently available evidence on the three acetylcholinesterase inhibitors (AChE-I) licensed for Alzheimer's Disease (AD) in Canada: donepezil (Aricept), rivastigmine (Exelon), and galantamine (Reminyl), as well as the neuro-receptor antagonist memantine (Ebixa). We conclude that:
* Donepezil has not been demonstrated to improve outcomes of importance to patients and caregivers (e.g. institutionalization or disability). Rivastigmine and galantamine have not been studied for these outcomes.
* AChE-I cause gastrointestinal, muscular, and other adverse effects and likely increase serious adverse events.
* There is no evidence that stopping AChE-I treatment is harmful.
* In advanced AD, memantine has not been demonstrated to improve outcomes of importance to patients and caregivers.
Bud - 23 Aug 2005 00:37 GMT > ...has not been demonstrated to improve outcomes of importance
> to > patients and caregivers (e.g. institutionalization or disability). The key words... There is no 'improved outcome of importance' in this disease. It is a progressive and eventually terminal condition. Most psychiatrists decry the medicines as having a very poor cost/benefit ratio and recommend either stopping them or never starting them. "Let nature take it's course.", I've been advised more than once. That said, my wife has been taking Aricept and Memantine for years and is, although now in the later stages of the disease, still taking them. I shall continue them. I am sure they are doing little for her now and I have been told many times that I am only delaying the inevitable. Also that it is like not pulling a feeding tube in a patient with little or no brain function. Well, my philosophy is all that life is anyway is just delaying the inevitable death. As long as she is concious, comfortable and able to swallow I shall have those medications given despite the high cost. How much is an existance worth? YMMV but that's my take on the reports of this nature.
Gwen Love - 23 Aug 2005 00:37 GMT Bud, I agree. Gwen
> > ...has not been demonstrated to improve outcomes of importance > > to [quoted text clipped - 16 lines] > despite the high cost. How much is an existance worth? YMMV but that's > my take on the reports of this nature. Evelyn Ruut - 23 Aug 2005 01:39 GMT > > ...has not been demonstrated to improve outcomes of importance >> to [quoted text clipped - 16 lines] > cost. How much is an existance worth? YMMV but that's my take on the > reports of this nature. Well said, Bud.
My mother in law was on Aricept for a couple of years and the doctor wanted to switch her to something else. The decline in her abilities was IMMEDIATE and NOTICEABLE. After a week of increased confusion and worsened incontinence we called and begged the doctor to put her back on Aricept. The improvement was again, IMMEDIATE and NOTICEABLE.
Proof enough for me.
I hate these people who come in with these stories trying to tell people not to take this or that drug. What counts is if the drug works for YOUR loved one. I have no idea what these peoples agendas are. It has to have a certain nasty karma to prevent people from taking a drug that might really help them.
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Best Regards, Evelyn
(to reply to me personally, remove 'sox')
Dennis P. Harris - 23 Aug 2005 03:03 GMT > YMMV but that's > my take on the reports of this nature. the spammer sending it will never, ever read your post. they never do, so replying to them is simply a waste of time and bandwidth. best to simply killfile folks who do such things.
Jo Ann Malina - 23 Aug 2005 09:46 GMT Dennis P. Harris <NO_SPAM_TO_dpharris@gci.net> is alleged to have said:
>> YMMV but that's >> my take on the reports of this nature. > > the spammer sending it will never, ever read your post. they > never do, so replying to them is simply a waste of time and > bandwidth. best to simply killfile folks who do such things. However, the organization appears to be a legitimate one. It is a group at the University of British Colombia in Vancouver that reviews the literature on drugs to try to make some sense of it by people who have no financial ties to the drug companies. Or in their words:
"The Therapeutics Initiative presents critically appraised summary evidence primarily from controlled drug trials. Such evidence applies to patients similar to those involved in the trails, and may not be generalizable to every patient. We are committed to evaluate the effectiveness of our educational activities using the Pharmacare/ PharmaNet databases without identifying individual physicians, pharmacies or patients. The Therapeutics Initiative is funded by the BC Ministry of Health through a 3-year grant to the University of BC. The Therapeutics Initiative provides evidence based advice about drug therapy, and is not responsible for formulating or adjudicating provincial drug policies."
In the paper mentioned in the original post, there are also trials with small but positive outcomes for Aricept. However, the conclusions are as was shown: the drugs commonly given for Alzheimer's either haven't been tested or haven't shown usefulness in treatment of the disease.
My conclusion: maybe I'm fooling myself, but I saw a difference in my mother upon starting Aricept plus Namenda, and I'm not pulling her off of them.
 Signature Jo Ann Malina, make spamthis best to find my address Extreme remedies are very appropriate for extreme diseases. -- Hippocrates
Alan Meyer - 24 Aug 2005 01:51 GMT ...
> That said, my wife has been taking Aricept and Memantine for years and > is, although now in the later stages of the disease, still taking them. [quoted text clipped - 6 lines] > despite the high cost. How much is an existance worth? YMMV but that's > my take on the reports of this nature. These problems are so difficult to analyze.
Did the drug do any good? Is it still doing any good? Is it worth the cost?
How are we to know?
Some of the people here report that they have seen clear effects. I could not tell any good effect of Aricept on either my father or my mother-in-law, and did see bad side effects in my MIL.
I think the best policy may be to observe for yourself.
If the patient has never had the drugs, try them and observe. If the patient is taking the drugs now, withdraw them and observe. A number of people have indicated that when they withdrew the drugs and saw a slide in capacity, restoring the drugs restored the capacity.
One of the things I dislike about expensive, proprietary drugs is that they suck tons of money, and tons of profits, out of families in need and out of the health care system that we all pay for with medicare taxes and insurance premiums.
Providing expensive drugs to people who need them is a good deed. But withdrawing expensive drugs from people who are not benefitting from them is also a good deed. People shouldn't feel guilty about withdrawing drugs for a trial period to see if the patient does just as well without them.
Anyway, that's my 2 cents.
Alan
Dennis P. Harris - 25 Aug 2005 03:30 GMT > People shouldn't feel guilty about withdrawing drugs for > a trial period to see if the patient does just as well > without them. sometimes it's not guilt, it's the caregiver's ability to deal with the behaviors due to reduced cognitive ability. if it appears to be working (i.e. the rate of decline appears slower) most of us won't try to fix something if it ain't broke.
> One of the things I dislike about expensive, proprietary > drugs is that they suck tons of money, and tons of profits, > out of families in need and out of the health care system > that we all pay for with medicare taxes and insurance > premiums. that won't happen as long as we have a congress that's captive to corporate pharm & insurance interests. look at the drug company benefit bill they passed --- a so-called "medicare drug benefit" bill that doesn't provide much benefit to seniors but is difficult to understand.
the whole health care & long term care system is dysfunctional, mostly due to corporate & professional greed. we need to get in step with the rest of the industrialized world and have a national single payer system.
Alan Meyer - 25 Aug 2005 22:40 GMT ...
> the whole health care & long term care system is dysfunctional, > mostly due to corporate & professional greed. we need to get in > step with the rest of the industrialized world and have a > national single payer system. Hear hear! I'll vote for that.
Alan
Bud - 25 Aug 2005 23:09 GMT >>.. we need to get in >>step with the rest of the industrialized world and have a >>national single payer system.
> Hear hear! I'll vote for that. I was once in full agreement but after seeing what politics has done to Social Security and Medicare I'd be almost afraid to put the nations health care under government auspices. Surely would require strong and permanent safeguards or it'd end up being another pork barrel for the politicos. I still remember reading one objection to the institution of the Federal Income Tax. Not an exact quote perhaps but something like, "Why, sometime in the future it could even reach ten percent!" If they only knew... Ha.
Dennis P. Harris - 26 Aug 2005 03:11 GMT > Surely would require strong and > permanent safeguards or it'd end up being another pork barrel for the > politicos. well, i've been voting for someone other than my state's lone congressman for 24+ years, but it hasn't done any good. if more folks voted for a new congress we might get some change. the problem is entrenched incumbents and the lobbyists who bri^h^h^hdonate millions in "campaign donations" to keep their captive incumbents elected. when are folks going to wake up and just vote out all the incumbents?
Karen - 26 Aug 2005 03:18 GMT My favorite clueless political comment heard recently by someone dissatisfied with our Prez "Well he certainty won't get my vote again!"
Either they haven't yet caught on that the Prez only gets 2 terms or they didn't realize he's on his 2nd term. Yet they vote every election -- and we wonder why politicians become entrenched. Sigh!
Karen
> On Thu, 25 Aug 2005 18:09:12 -0400 in alt.support.alzheimers, Bud > well, i've been voting for someone other than my state's lone [quoted text clipped - 4 lines] > captive incumbents elected. when are folks going to wake up and > just vote out all the incumbents? Bud - 25 Aug 2005 23:35 GMT > These problems are so difficult to analyze. > > Did the drug do any good? Is it still doing any good? > Is it worth the cost? > > How are we to know?
> Anyway, that's my 2 cents. Understood. I abbreviated the medical history and meant my post to be a contravening reply to the generally pessimistic reports issued from reviews of Alzheimer's drugs for the consideration of the readers of the newsgroups to which the 'letter' was sent. In my wife's case, Aricept was discontinued, replaced then re-started for the obvious reason of behavioral and cognitive changes. It was discontinued by a psychiatrist to the tune of - don't load her up with medicines that ultimately prove useless. Net result, she then required antipsychotic and behavorial meds to keep her calm. So much for therapeutic overload. I read of Memantine, requested opinion and Rx from the internist. He thought it might be worth while but couldn't perscribe it because it wasn't approved at that time in the US despite a decade of use in Germany. I ordered it from England until it was approved by the FDA and we were able to discontinue all other meds except the Aricept. She's been treated for Alzheimer's for about ten years now and has required placement in an Alzheimer's unit for five of those. Do the meds still help? Honestly, I don't know if and/or to what extent. I am inclined to doubt if as much as before, certainly, but I am reluctant to loose the last therapy of known benefit. I know someday she shall cease to eat/swallow and then I will face the eventuality of 'letting her go'. 'Til then I'll continue to fight like hell and seek/hope for that 'miracle drug' to make itself known. Sorry to be so verbose but I'm generally withdrawn and probably won't elaboraste again. Thanks for everyone's patience, understanding and advice/thoughts. Y'all have a good 'un now, y'heah? ;-)
Anthony Shipley - 26 Aug 2005 00:48 GMT >Sorry to be so verbose but I'm generally withdrawn and probably won't >elaboraste again. Thanks for everyone's patience, understanding and >advice/thoughts. Y'all have a good 'un now, y'heah? ;-) Elaboraste?
Is it in any dictionary? It certainly sounds like it should be :-)
-- 2 + 2 = 5 for sufficiently large values of 2.
Bud - 26 Aug 2005 01:58 GMT > Elaboraste? > > Is it in any dictionary? It certainly sounds like it should be :-) Heh, caught with my s hanging out again. ;-)
Jo Ann Malina - 26 Aug 2005 11:42 GMT In alt.support.alzheimers Bud <Bud@romance.org> wrote:
>> These problems are so difficult to analyze. >> [quoted text clipped - 30 lines] > elaboraste again. Thanks for everyone's patience, understanding and > advice/thoughts. Y'all have a good 'un now, y'heah? ;-) It sounds like you're taking good care of your wife. It isn't easy.
It's important that we keep ourselves grounded on treatments for this dreadful disease. That means taking in negative as well as positive information. Just remember to read past the headlines, and take all the studies as data points and not final judgments.
As for you going on too long, the lovely thing about Usenet is that if people don't feel like reading what you've written, they're free to skip any or all of it. Not like being cornered by some long-winded gabber at a party.
That reminds me that at one of the first parties I went to after moving here, I was cornered in the kitchen by a drunk who explained to me at great length why the New York Times was the greatest newspaper in the world. 30 years later it still makes me laugh to remember it.
Anyway, keep on typing. It's good for you to vent, and it doesn't hurt us.
 Signature Jo Ann Malina, make spamthis best to find my address The people who say "You are what you eat" have always seemed addled to me. In my opinion, you are what you think, and if you don't think, you can eat all the meat in Kansas City and still be nothing but a vegetable. -- Russell Baker, _The Rescue of Miss Yaskell_
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