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My mom is in Assisted Living. She has been on Exelon patch for about 5 yrs and Nemenda for about 4 yrs. Once I was told that after 4 yrs people on the meds are about the same as people who never took any meds. Does anyone have any experience with this? Is there ever a time when patients can go off meds? Do they get worse ? Don't want her to keep taking if no longer effective. Also, they are very expensive as there are not generic versions of these.

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Hi Ritashelper,

As mentioned by several people on this thread, some people get better once they are off the drugs, so you are right to question her being on them too long.

Several studies have found that there is a time frame where the medications help some people (not everyone by any means) but once they pass a certain place in their disease the medications no longer help and may do harm because of side effects.

This is something that you need to discuss with the doctor. You are also free to seek a second opinion. You're smart to question any drug and also question the length of time the drug is given.

Please keep us posted as you go through this process.
Carol
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SIDE EFFECTS: The most frequently reported side effects associated with donepezil include headache, generalized pain, fatigue, dizziness, nausea, vomiting, diarrhea, loss of appetite, weight loss, muscle cramping, joint pain, insomnia, and increased frequency of urination. Seizures, fainting, abnormal heart beats, and stomach ulcers also may occur. Tacrine (Cognex), another anticholinesterase medication used in the treatment of Alzheimer's disease, is associated with liver toxicity. Donepezil does not appear to be associated with liver toxicity.

Reference: FDA Prescribing Information
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When Should Alzheimer’s Drugs be Discontinued?

It can sometimes be difficult to tell if Alzheimer’s drugs are providing any benefit, especially after they have been used for several years, because no one knows how quickly the disease would have progressed without them. Sometimes, caregivers believe the drugs are not doing any good and decide to discontinue them. Studies have found that some patients may decline rapidly once the drugs are discontinued; and even if the drugs are restarted, these patients may be stabilized at their new level of cognitive function but will not regain their former level of function. However, other patients show no discernible effects when the drugs are stopped; and some may actually improve when taken off one or both drugs if they have developed adverse effects from them.

If you decide to stop giving your loved one these drugs, it is always a good idea to slowly wean your loved one off the drugs, one drug at a time. That way, if the loved one experiences a sudden decline in abilities, the drug can be restarted before significant damage is done.

What about when the loved one is in the advanced stages of Alzheimer’s? There is no substantive evidence that these drugs prolong life. As far as is known, they simply help the damaged brain function better than it would without them. But sooner or later, there comes a time when it seems senseless to keep on administering these drugs.

When to discontinue Alzheimer’s drugs due to progression of the disease has not been studied per se, and many healthcare guidelines don’t even address the subject. The ISOA guidelines recommend that physicians discontinue Alzheimer’s drugs if patients reach “profound” stages of dementia, when the patients has no cognitive or functional skills left to preserve. Note that there is a distinction between “severe” and “profound” dementia. The guidelines from the American College of Physicians and the American Academy of Family Physicians indicate that “if slowing decline is no longer a goal, treatment with [Alzheimer's drugs] is no longer appropriate.” Others have stated that treatment should be withdrawn at the point were a patient is entirely dependent in all basic ADLs, and the family and physician believe that “meaningful social interactions and quality of life benefits are no longer possible.”
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Now you have just found out why the pharmaceutical companies are so wealthy! No drug yet has been proven to abort dementia, and I stopped all those drugs for my husband after a few days due to the side effects. He is still living, he is not drugged, does not suffer from side effects, and is much happier. Dementia is a terminal disease and until someone discovers how to arrest it, nothing is going to help slow the disease. That said, yes, if you have MPOA for your mother you may stop those drugs. Discuss your displeasure with the drugs with her doctor and see what happens.
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I know more about my husband's condition and what affects him and does not affect him than his doctor does. She doesn't live with him and care for him. Besides, a lot of doctors "are in bed" with the pharmaceutical vultures. I trust my own judgment when it comes to my husband's dementia far more than I trust my doctor's or her pharmaceutical pals. I wonder if they're going to send her on a cruise this winter.
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As you see from these responses (a) people feel quite free to vent their personal opinions as if those were tested facts; (b) there is a wide range of experiences. What's useful about anecdotes is they may encourage you to ask the doctors questions, and to ask more than one question of more than one doctor. Otherwise it's dangerous to go by anecdotes!
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It would be in the book "The Myth of Alzheimer's" by Peter Whitehouse, the leading specialist in the field.
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I discontinued Aricept and Namenda to witness no change in my wife's dementia.
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My mom is now off Aricept after 5+ years. I'm not exactly sure because she was taking it before anyone knew she had a diagnosis. It was not helping anymore. She has continued to decline a lot this past year, so why bother.
She's also come off several other meds that are fairly pointless like her bladder control pill and one of her cholesterol meds.
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I halved my mothers Nemenda and Aricept. Too many side effects. When I mentioned it to her heart Doctor he said "A lot of elderly patients need pediatric doses". He seemed to be the only gone that got it! She was much better without all the meds. In addition I took her off a sleeping pill, halved an anti anxioty pill. stated giving her quite a few vitamins, Vitamin D and Folic acid, B12...She did much better!
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The doctor prescribed Namenda and Exelon for my husband soon after he was diagnosed, but after a couple of years on this crap, I stopped giving them to him. I noticed that the Namenda seemed to cloud his thinking, and I was very afraid that he might accidentally put an Exelon patch in his mouth and eat it. I think this stuff is just another way to fatten the billfolds of the pharmaceutical vultures.
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