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Neurologist said since my husband sometimes picks off the Exelon patch, we should stop it for a week and see if he gets any worse!! He claims drug companies used to recommend using Exelon patch AND Namenda, which my husband also gets. Now the drug companies say it is not necessary to use both. I told the Dr. I would use up the 2 month supply we have (at $500 per month) and then make a decision. PCP and pharmacist say my decision is OK, but stop short of saying the neurologist is wrong or the drug companies have changed their recommendations. Anyone have experience with this?

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I wonder this also. My Mom was up to her maximum dose she could tolerate and Dr ordered hospice due to wt loss and memory loss. Hospice said patch should be stopped but I can see a big increase in only 1 month of more memory loss and behaviors since patch stopped??
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This is a question that his physician will be more equipped to handle, frankly.
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I, on the other hand, stopped it as to neuro advice when my insurance changed and price went sky high. Said it was not doing any good any longer. Wrong move! Within three days, LO was a zombie! Put him back on and he is more steadily going downhill again. He will soon enter Memory Care but he will be on the patch until he is so bad nothing will help.
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When I put my wife into memory care I talked to the Doctor about the Exelon patch and its continued use. I was seeing a decline in her and the patch did not seem to help. He said stop using it and if I want I can always go back and put it back on. After stopping I did not see a difference and I felt if I was putting it back on what was I delaying. I never used it again. 19 months later she passed as she declined because of the disease. I stand by my decision as to why delay the ultimate outcome by a few months even if the patch delayed the death a little. She was not the person I married but she was the person I loved and we both had written do not delay my death if there is no cure.
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I never understood these medications. Yes, nice to have our LOs with us mentally for a little longer but your just prolonging the ineffitable. Is it fair to our LOs? Now... if it stops the progression...OK. I have ALZ in my Dads side. Its a horrible thing and the person can last 10 yrs at least. The last few years they aren't even here. Both my GM and Aunt went the whole way. My Uncle died of pnemonia.
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My 52 year old son was on Excelon Patch but after a couple of years it appeared to be having no positive effect. The neurologist changed him to Namenda and Ariscept but we don’t see any improvement. In fact, he struggles to complete a sentence without losing his thought! 😞 so sad! He’s so smart but has such difficulty verbalizing. I truly don’t believe these drugs do any good!!
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My late husband, who had vascular dementia, was on both and I never observed any difference. When he had major stroke and went to hospice they took him off and he actually became more lucid.
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Can you place the patch in a location that he can not reach?
The center of his back?, Upper thigh? Lower back?.
Frankly I think none of this stuff works at all after a point.
And who is to say what the decline would have been without the drug.
Problem is as care givers we are caught in the middle.
Do you take the chance that there will be a decline without the drug...or do you have your loved one start a drug regimen that may or may not work. That may or may not have side effects. That you may or may not know when it stops working if it ever worked at all.
If you are happy with the way the drug is working and you want to have him continue with it look for other places that the patch could be placed. If it does not seem like the drug is working ask how it can be discontinued with the least number of side effects. Would he have to do a lower dose for a week then a lower dose than that until he is down to a point where it can be stopped? (This is called titrating down).
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My wife was on both Exelon and Namenda until she was placed in Hospice Care last Dec. when she was taken off both. I have seen no appreciative difference since then in her condition. She was diagnosed with Alzheimers in 2008 and put on both medications. I do believe they slowed the progress but as the condition worsened they became ineffective. So, I would suggest doing what the Dr requests and see if there is any difference.
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All of the patches are for mild to moderate conditions. There does reach a point where they may no longer be effective. So if the condition is advanced, there is no point in continuing it. At that point you focus on comfort care for both the patient and yourself.
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