(Source: Institute for Quality and Efficiency in Healthcare) - Researchers at the Institute for Quality and Efficiency in Health Care (IQWiG) report that there is no scientific proof that patients with moderate or severe Alzheimer's disease benefit from drugs containing the agent memantine.
Memantine is approved for moderate to severe Alzheimer's disease, but not for the mild stage of the disease. It is intended to prevent an excess of glutamate from damaging the brain. Glutamate is a neurotransmitter, a substance that transmits neural signals. Animal experiments have shown that Alzheimer's disease might have a permanent excess of glutamate, which leads to neural cells dying. Memantine is intended to prevent this without affecting the normal transmission of neural signals.
"As long as it is not proven that therapies give patients or caregivers a perceptible advantage, it is very difficult to justify continuing to prescribe them when their costs are carried by the general public," commented Peter Sawicki, Director of IQWiG in Germany. "The number of elderly people is growing and so are the medical and social problems associated with Alzheimer's disease. I don't think that we will find a simple solution to this problem in the near future. That's why it is important at this stage to provide better social and medical care to patients and to relieve the burden for family caregivers. And it is surely better to 'invest' in this rather than in drugs, where we don't know whether they actually provide a benefit."
As I see it drug threapies for AD will always be difficult to 'prove'. What seems to always be left out of the 'benefits' is that AD is terminal. There is no cure. So no drug will EVER show a 'benefit'. Do a MME - give drug - give MME - was there an 'improvement"? If there is an improvement then that drug might be a "cure". Which is highly unlikely.
The disease is rotting the brain. the decline WILL happen. Unfortunately (as we all know) the decline is inconsistant and affects so many different areas of function it is almost impossible to quantify. ONE TEST JUST DOESNT DO IT. (see Joan's recent blogs)
The real treatment goal is to match the decline of the brain with the decline of the body. (we all hope to die when both our brain and body is totally depleated not when just one is non-functional)
The evaluation should be; have AD - take meds - follow with a detailed evaluation that tests much more than a few parameters. Then (and this is the hard part) try to compare the rate of decline with someone who took nothing. Which is almost impossible when the NATURAL decline is so variable and individual. Arggggh!
Cure? it aint gonna happen in my lifetime, all I want is something that will keep my wife doing her ADLs in the next 5 years and still able to toilet herself in 10 years. By then she should be totally depleated and maybe heart disease or cancer will take her. . . .
Drugs? or Social Services? The choice is expensive either way. if the see-saw is tipped too far one way the other becomes unmanageable.
Perhaps the new PIB imaging will better allow reseachers to view and quantify the changes and declines and target drug therapies. Until then my suggestion is to stop the testing in the "moderate to severe" range and go after EARLY STAGE! Whether it is cancer, heart disease, infectous disease or whatever the cure is NEVER at the end stages!
I stopped all testing after 5 years into this. Wasn't helping him and just frustrated both of us. Stopped the Aricept and Namenda after 7 years - not doing anything either. He has not declined anymore after going off those drugs - almost a year ago. He is happier, I am happier with not so many doctor's appointments. We see his PCP every 3 months for labs - and that's about it.
I've done about the same as Vicki - no more testing, no more AD medicines. I have not seen any significant decline since stopping the meds. She's happy most of the time, so I won't "rock the boat".
My DH has been on Aricept and Namenda almost 4 years, he is also on Sertraline and Seroquel. I Have no idea when or if I should stop any of them. Did those of you who did stop them do it on doctor's advice or make the decision yourself. As I posted on another thread DH is much easier to get along with than he was before he was Dx'd so right now I have no desire to stop any meds.
I wonder also what good it does to have brain biopsy after the person is dead. As far as I have read it just confirms that the patient had Alzheimer's. Do they learn anything from the biopsy that is useful for those living with Alz?
Every drug DH took had side effects worst than the symptoms they were supposed to help. He only takes his blood pressure meds and Pamelar. Now, if I could wave a magic wand and eliminate the hours from 6 to 10 each night I would be a happy camper. The daily diapering, shadowing, mumbling, baths and reassuring him is hard but not as difficult as sun downing for me. And please the man in the mirror and those people on TV who are in my house...GO home......
Jean21, my DH's son is a neurologist (not Dh's). He and I talked about it and his feeling was that after so many years, most AD drugs stop doing the slowing down of progression. We then talked to his PCP and decided to stop the Aricept first; no change - then weaned him off the Namenda - also no change. He is also on Sertraline and it has been wonderful for him.
I'm with Vickie, Marsha & Bama. We stopped all AD meds, and the twice a year visit to the neuro. The MME always confuses DH, and if he scored higher than the last time, he thought he was getting better. I live with him, and he's not getting better. He is declining, but no more than he did while on the meds. We, too, go to PCP more often for labs, etc. The only meds he's on now are heart and bp meds. As Bama said, the side effects of some of these meds are horrible. And Jean21, no brain biopsy after death here!
I'm ready to quit the stupid meds. I'm sure they're useless. It's just one of those "what if" things. "What if" I precipitate a faster decline by doing so? Maybe I don't care. It's more a responsibility I feel toward other family members to respect their idea of doing the right thing.
My FIL's brain along with his eyes were donated after death. Boston is one of the places they are researching the belief that they can tell by looking into the eyes before other symptoms appear to diagnosis AD. Donating for research to try and learn more is good. If our spouse should die earlier in the disease it would be interesting to me to confirm he actually did have AD or if it was something else with similar symptoms.
As for Memantine - my FIL was not on any AD drugs until after my MIL died. By then he was at least 15 years into the disease, was still continent, could talk some but usually was living back in his WW2 days. The VA put him on it soon after entering the facility and it was not long before he was wearing diapers and not talking. But, he survived another 9 years of a slow decline. Did the Menantine slow it down or was he just destined for it? I don't know but personally I believe it slowed it down. As I have posted here - the side effects were more than we were willing to do. My hb has been on galantamine now for 2 1/2 years. I do not know if it has slowed anything down. My feelings are that once traveling is too stressful for him and we settle somewhere I will take him off it. He wants to go off it but I have told him as long as it cost us just $8 a month might as well stay on it.
Once my DW couldn’t recognize her family anymore I stopped all of the drugs except Seroquel. My goal is to keep her happy and most of the time we are successful. Does she know who we are, where she is, etc, NO. Is she happy in her world. YES, most of the time.
According to our neurologist, and many others in the area, Memantine (Namenda) was used for advanced Alzheimer's Disease when it first came out. Now, they prescribe it along with Aricept right at the beginning. Sid has been on both for 4 1/2 years. When he first went on Aricept, I could see that he stabilized right away. They added Namenda a few months later. Did it help? Did it slow the progression? I think Aricept did for a while. Would he be way worse off now if he wasn't on them? Impossible to know unless I take him off of them. Which I am not going to do yet.
I am with you Joan, My DH is on Aricept once a day and Namenda twice a day. He also takes Sertraline and Seroquel which stopped his hallucinations and paranoia. I have no intention of stopping any of them and if his neuro and our PCP suggest stopping any of them they will have to guarantee none of those things will start again.
There comes a point when it does becomes clear that the medications aren't working. I think everyone instinctively knows when it is time to admit they are not working. For me it was when Lynn had ZERO recall, scored in the single digits on his memory testing, and didn't know his own children. Clearly, it was not helping and the side effects were hard on Lynn. There was no decline once he was taken off, in fact, he seemed clearer for several months. go figure
I decided at the first of the year to gradually reduce the Namenda; he's down to half a pill once a day from two pills a day and will stop that in a week. And... I swear he is BETTER!! His aphasia is less, he seems more alert watching TV - a few minutes ago he was trying to explain about a school being built in Tibet.. and this is after YEARS of being out of it much of the time. I have not stopped the sertraline, he has not stopped his smiling and happy demeanor; I have not stopped the neurontin (gabapentin, for seizures, but I may stop that too). He doesn't take seroquel but does get trazadone at night.
so go figure. He's 86, bedridden, incontinent.. but pleasant, and home with me.
Update on Memantine/Namenda: They have coupled it with a fragment of nitroglycerin to improve its effectiveness - at least for those lucky rodents! They haven't studied it in humans, but they have named the new drug "NitroMemantine."
See more at: http://blogs.palmbeachpost.com/palm-beach-health-beat/2013/06/26/after-a-decade-scientists-quest-to-make-a-better-alzheimers-drug-shows-progress/
For information about the drug approval process (makes you wonder how any drug makes it onto the market) I recommend Bad Pharma by Ben Goldacre. While is is mostly about who ineffective or dangerous drugs make it to the market, it gives a thorough review of the testing required to release the drug (and how we and doctors do not get accurate information about them).
Yes, I thought it interesting that the developer of memantine is basically saying it doesn't work - a drug which is approved and being administered all over the country as we speak. Amazing!
"He explains: Namenda, whose generic name is Memantine, isn’t working as well as it should based on its molecular shape, Lipton said. He blames the north-north problem. Think magnets. Try to push the same ends of two bar magnets together, and they don’t attract. They repel. That’s what happens when memantine reaches a damaged neuron, he said. It has a positive charge. So does the damaged neuron. The drug winds up being repelled by its intended target, Lipton said. And so he’s been searching for another piece of a molecule to allow opposites to attract, to allow the drug to hit the target on the neuron, every time."
Sid was on so many pills that I tried to take him off of the ones that I didn't feel were necessary. When I asked the neurologist about taking him off of Aricept, he said - "If you want to take him off of anything, take him off of the Namenda, because studies haven't proven it to be effective." You can say I was just a wee bit UPSET - What was I paying all that money for if the &%#@& pill didn't work?????? I weaned him off of it, and didn't really see any difference. He was declining and continues to decline.
Keep in mind that NONE of the 5 currently FDA-approved Alzheimer's meds were EVER proven effective to ANY degree for even one year in ANY clinical trial prior to FDA approval. That is why not even the drug manufacturers will state that any of these meds can possibly be effective for even a year ... and why the drug manufacturers will always say their med MAY be helpful to SOME people with Alzheimer's for SOME period of time. Sadly, most neurologists, geriatric psychiatrists, and memory disorder clinic docs, let alone internists and PCPs, don't have the time to read the fine print so they keep advising patients and caregivers to continue taking useless ... and expensive ... Alzheimer's meds for years and years when that money can be better spent on day care programs, home health aides and companions, etc. If you don't believe me, read the clinical trial data yourself on the website of each FDA-approved med ...Aricept, Namenda, Excelon, Razadyne, and Cognex. (In fact, Cognex is now rarely prescribed due to safety concerns.) A major review of all research studies on Alz. meds by Consumer Reports in 2012 also concluded that none of them are very effective for most people with Alzheimer's ... and even if they are, only marginally for a few months. The NIH states that none of these meds are effective for more than a year of two ... at best. Again, I'm not talking about dealing with behavioral issues which then leads to other meds such as Seroquel or Rsiperdal which may or may not be effective. But as far as dealing with Alzheimer's symptoms such as memory, reasoning, etc. ... the most commonly prescribed meds just don't help for very long, if they help at all. I refer to them as "expensive bottles of hope" in a forthcoming article that will soon appear in the Journal of the American Medical Directors Association.
I know that memantine worked for Gord. He was in a study to prove to the provincial government that it was worth their funding. Gord was in a double blind study. He used the pills for maybe 3 months. At the end of that time, we were given the active drug. Within a couple of weeks, I knew that he had been on the placebo previously. The difference in him was obvious and wonderful. I think it only lasted about a year but it was a better year because of it.
I have him off the patch now...no more tremors. I am slowly weaning him off nameda which he has been on for about 5 years. His dx...FTD with alzheimers.... If the nameda is all it was cracked up to be why the decline? Big pharm...big bucks... Can't justify the cost
I read more and more about the lack of help these drugs are for the majority of AD patients after 6 months, yet doctors keep them on them forever cause there is no real study to prove or disprove if they are still effective. It remains the only way is to take them off and see. If they starting sliding downhill then they must have been working. If I had to pay more than $8 month for the galantamine, he would be off it.
According to John Hopkins University there is much disagreement that this medicine can cause a "false hope" and/or the benefit so minimal.
At this time, I feel that the because of the side effects of Namenda he could actually show improvement when weaned! Another words, how can we determine it our loved ones are experiencing side effects or the progression from the Alzheimer disease?
This week I will now begin the weaning process of Nameda and hopefully my husband may show improvement (as some of his symptoms could be related to this medicine.)
He will continue on his other medications which I believe have been tolerated well and have shown benefits.
My DH was taken off of Aricept a few months ago. He was taken off Namenda last month at my request because the Psychiatric Nurse Practitioner & I agreed that it was probably not helping him anymore & the cost was outrageous because they weren't ordering a 3 month supply. He did become more aggressive, but he also took a steep decline. I'm still glad that he is no longer taking it.
Charlotte, I am encouraged to hear that your husband has done well without Namenda. This is very encouraging. Also, I recently noticed that husband has edema in his ankles (another side effect). He also mention that he was having some "vision changes" ....possibly Namenda? Well, it wouldn't surprise me! Wishing you a happy week, Lullie
ElaineH. Just a thought about the Namenda and more aggression accompanied with a "steep decline"....would this have happened if we was still on the Namenda? Eventually as your spouse continued on the path of the journey he was going to have a decline, so all things being equal, can it be attributed to no longer being on Namenda or was it just by timing? Something that we will never know.
Chances are the Namenda does not slow progression but help masks symptoms. When it no longer works, be it from the brain getting used to it or progression that goes beyond what Namenda can help, there is a steep decline. But I suspect that this is where the person would be if they didn't take Namenda.
There is a theory that Namenda doesn't work as theorized because its molecules are repulsed by the molecule it is supposed to attach itself to. Both molecules have the same charge. They are now working on a varient of namenda that has an additional molecule added to overcome this repulsion problem and inistudies are promising, but I think it is only up to the stage of animal studies and working with brain cultures. A long way from human trails.
I also read the Namenda theory regarding the molecular properties. I believe that the study is being conducted with rodents. Seems all the medicines (not just AD prescriptions, but most) sometimes cause worse side effects than the actual disease. So now another symptom appears and viola the doctor writes a prescription to eliminate that original side effects...and before you know it BIG PHARMA has us not on only 1 prescription medication but numerous ones. Very profitable for them at our expense! GRRRRR
We knew it was the Namenda when his new glasses arrived and they were blurry. We called for an appointment to have the Rx checked and in the meantime he went off it. Then the new glasses were clear. That is when I researched and found vision changes plus the others I had already found out about.
lulliebird – you are right – somewhere along the journey he WAS going to have a decline & we will never know if coming off the Namenda attributed to it. And I agree with paulc that it is very probable that my DH would be at this level had he not taken the Namenda. In any case like I said, I'm glad he is off it.
If you read the description of drug development in Bad Pharma you would think that no drugs would ever make it to the market. So much goes wrong.
While the drug companies do hide information about side effects and poor results from studies, I don't think they plan on side effects to cause the sale of additional drugs. But considering their lack of ethics, it is no wonder that no one trusts them.
In the past you have mentioned "Bad Pharma" in previous posts. Are you referring in an article you read on the internet or a book? If it's a book, could you please provide the title and author? I would be very interested in reading this.
The more information which we can gather makes us better prepared for the future protection. There is no question that in this country we have a problem with the AMA, FDA, and the Pharmaceutical companies all being bedfellows.
Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients by Dr. Ben Goldacre. http://www.amazon.com/Bad-Pharma-Companies-Mislead-Patients/dp/0865478007/ref=sr_1_1?s=books&ie=UTF8&qid=1373373433&sr=1-1&keywords=bad+pharma
The FDA is better than it's European counterpart. And if you think alternative medicines are better you need to read his Bad Science.
He doesn't go for conspiracy theories. He presses the need for openness in drug testing and points at the many places where the systems fail us. Doctors don't have the information they need to serve their patients (he discusses an experience of his own with a patient). Nor do patients have this information. Regulatory agencies approve/disapprove drugs, don't say if a new drug is better than existing ones (he explains why there is a need for drugs that aren't the best), and are opaque in how they operate.
Godacre is angry, but he doesn't wear a tin foil hat.
Thank you, paulc, for stating this so clearly. Insurance plans and hospital corporations (who now employ the doctors) also dictate what drugs a doctor can use and will not accept an alternate even if the physician knows that that will be the best, well-tolerated choice for the patient. It easy to see that there are deals between the providers and the pharmaceutical companies that totally by-pass the physician. That is why so many middle-aged physicians with great clinical skills and experience are retiring early or have lost their patience and bedside manner. We are losing a whole generation of talented doctors too early.
I was just reading yesterday that one reason why many hospitals are buying up doctor offices is so they can increase their Medicare income. If a doctor does a procedure in his office, and the identical procedure is done in a hospital, Medicare will pay a higher fee to the hospital. So hospitals buy up doctor offices, do not change a thing, claim the expense as a hospital expense, and pocket more money. I understand this costs Medicare a lot of money.
Thanks, I am looking forward to reading, investigating, and understanding more about our pharmaceutical companies.
Your recent post: I believe what you said about Medicare/government "business" is valid and insightful. When questioning the "whys" about what motivates we sadly we must look at the money trail. The money trail, in most cases, provides the answer for motivation.
Your insight and prospective is always appreciated, Lullie
I read somewhere about how the owners and administration of hospitals are getting all that money - not the doctors, nurses, other staff nor are the patients benefiting unless you call rising prices a benefit!
Lulliebird, thanks for the kind words, but it is just stuff I have read.
Charlotte, I think one of the problems we face is the privatization of hospitals. There have always been private hospitals but the ratio of privately owned to nonprofits has changed for the worse over the years. I am lucky that our local hospital is a nonprofit. It went private a number of years ago but that didn't work out and returned to nonprofit a year later.
But things aren't necessarily that simple. I was reading yesterday that some hospitals are also becoming health insurance companies, cutting out the influence of the insurance companies and giving themselves more flexibility in treating patients.
My husband is still on Namenda after about 8 yrs. Psychiatrist says it seems to help with agitation. Although Steve is on other drugs for that, he is calm and cooperative, so we're keeping him on it.