My spouse has been on Namenda for approx. 5 years...about 9 months ago this neurologist suggested that the Namenda used in conjunction with the execlon patch. I am now questioning the effectiveness of both these medicines. In the last 9 months (since the prescription of execlon) he has declined extremely rapidly. Last week I went to pick up his refill for the patch and with insurance it was over $110.00 for a month supply. I read that the effectiveness of the patch works in only approx. 30% of the patients with alzheimers. Today I picked up his refill for Namenda and with insurance it is now $125.00 for a two month supply. After reading about namanda literature says after several years it is no longer effective. Based on these facts along with the cost I am seriously considering discontinuing these two medications.
Our medicines have been running approx. $250.00 a month and now with this cost its increased to almost $400.00 a month. I am seriously questioning the effectiveness. We need to be practical.
Any and all feedback and thoughts would be much appreciated. Thanks, Lullie
Lullie, I think a lot of us reach this point. For Lynn it wasn't the cost but the side effects it caused. If it isn't working, what is the point? Talk it over with your doc and see what they say.
The primary reason is not the cost, but rather it's effectiveness. If I felt the medicine was working I could justify the cost. However, I recently read that persons with FTD should not be on Namenda as it can cause aggressive behavior. He has a history of aggressiveness and has for many years.
Yes, I definitely do plan on talking it over with his neurologist. I thought possibly some of the board members spouses may have experienced that the medications were not effective on the spouses (particularly after so many years)----30% effectiveness for a medication is not terribly impressive.
you can only know if weaning them off is going to be a good option if you try. like the others say many of us came to the point of taking them off the meds, in our case side effects as well. but yes why not add cost into the mix. they are quite expensive and if you see no added benefit then go with your drs recommendations. I found many drs do not see our views when it comes to taking them off though. like don't rock the boat if its working. thing is like you say sometimes they are better once off the meds. or rather on something else to help control and keep them within comfortable functions. many here too have tried them off the drugs then if it didn't work readded them back. consult your dr.and go from there.divvi
Exelon patch is not recommended for people with FTD, negative reactions. Namenda has been shown not to help with FTD.
But here is a problem. 25% of cases of FTD turn out to be something else, so it is worth trying these medications. My wife lasted 1 hour on the Exelon patch, which reinforces her FTD dx.
Do talk with the doctor about taking him off these drugs. They need to be withdrawn carefully, and just one drug at a time. Some people have reported spouse going downhill after removing Namenda.
Lulliebird, he had been on Aricept for 3 1/2 years when we decided to take him off it. His appetite was nil. He'd lost a lot of weight and was in late stage 6. The doctor and I decided it was worth stopping it in order to have him better nourished. To everyone's surprise, he became more mentally alert, outgoing and happier, and he remained that way until he died about 4-5 months later. It was a real gift to have him present again. It was like having the old Eric back. However, his appetite did not improve. He died because the muscles in his throat became so weak he was chocking on his own saliva. In my opinion, the Aricept helped the first year, but by the third year was causing harm. By stopping it, I don't think we shortened his life, only made it better. Cost was not a factor in the decision.
Divvi, Yes, I don't "want to rock the boat" and I appreciate you input. I stopped the patch last week and have been watching him extremely closely. I have not seen any changes for the better or worse. He continues on his Namenda and will until I counsel with his neurologist. I am a little reserved about withdrawing the Namenda but we shall see.
Paul C....wow...I wasn't aware of the FTD and the patch. Now I am glad that I have made this decision as I believe it to be a sound one. No changes pro or con..so why put more chemicals in the body if there aren't results?
Mary 75...I am so glad for you and Eric that you made your decision so that you had a happier Eric the last few months. Life is so valued and each day that you could have a little more happiness and his too was a true blessing.
Best to all---gosh I love this board and its members!!!!
Isn't it outrageous to be paying "big pharma" such large amounts for medications that seem to be of dubious value. If they made much difference it would be another matter. Just venting.
My dh started with Aricept which gave him terrible incontinence problems (guess who dealt with that?) and didn't do a darn thing for him cognitively. Initially, it did help with his aggression but not for long. The doc added Namenda about 1 year into treatment and within 2 weeks, the devil had returned and I immediately took him off Namenda and I ditched the aricept about 6 months later. I told the doc about it the next time we saw him about 6 months later. We've been very fortunate with both Neurologists (the first one moved up to greener pastures), both have been easy to communicate with and very sympathetic to the needs of the caregiver and very good with dh. I have a friend who moved her 93 yo father in with her and husband only to discover that dear dad was much worse than she knew and now her life is hell. She has no luck with doctors at all; I feel very badly for her. The docs need to be our partners.
Just wanted to report that my husband has been off the execlon patch now for a couple of weeks. He is doing slightly better...his hands no longer tremble as much as when on the patch. He saw his neuro guy this week and he concurred with me that it's probably caused the hands to shake. No more patch hooray.
For what it is worth my DW was on the namenda and the excelon patch for about a year and a half prior to her passing. It made little if any difference the decline was what it was. There is truly no way of knowing whether those meds made any difference. I was fortunate in that our PCP provided samples for us to use so cost was not an issue but as Joan has said many times alzheimers is different with every patient and as the caregiver you have to follow your heart when it comes to what treatment to use and when the end comes as it always will you have to have peace about the care you provided. God bless all of those affected by this devastating disease.
Oh your input is of much worth! Thank you because after chatting with husband's Neuro guy plus my pharmacist any neurological problem with medicines is not in the same league as a heart medicine, blood pressure medicine, anti-depressant or for that matter any other medicines.
I am very seriously considering weaning spouse off of nameda. He's been on it many years and according to my research it is no longer effective. In fact, if the medications are not effective then these chemicals could be harmful rather than beneficial. How possibly could unnecessary ineffective chemicals be of value?
Thank you for your sharing you personal experience. God bless you!
My husband was put on Namenda. It was $435. Aricept (donozipril) and Trazadone and Celexa. He was having nightmares. The Dr. put him on the Trazadone at night for the nightmares and the Namenda 2xs a day. So far so good. He was getting very combative and belligerent. He was also having problems with his gait. He keeps saying that he has Alzhiemers because he's on Aricept. This man was a DDS retired at 68. I was sooo greatful that he retired. It's been a very difficult number of years. So far so good on the new meds. I am sure they are going to wain or get upped. I have to call his son to help me talk to him now. He does crazy things...! The Dr. also thinks he might have Parkinson's.
lulliebird, heed what paulc says since he's been dealing with his wife's FTD as well. Although I have said it many times (and in many topics before) my hb who has bvFTD became violent and physically abusive on Namenda. I have NO DOUBT it was the Namenda that made him violent and escalated his aggressive behaviors 5 years ago at the very beginning of this journey. The DON at one of the ALF's I was considering at the time told me that when she put all her residents in the AD unit on Namenda 25% of them became aggressive and physically combative. DH was on Aricept for 3 days and began having suicidal thoughts.
Neither Aricept nor Namenda helped with his behaviors and in fact made them much, much worse. Seroquel has been our friend but everyone is different.
My DH has on both and for the first couple of years I think it worked, but after a while I think it wasn't effective and I took him off of it because it was expensive...
Paul, Yes, I rethinking the Namenda now. He's off the patch and doing better as the hand tremors are nonexistent. FTD is the worst because I don't believe there's not much out there for these sufferers. He is taking olanzapine in the a.m. and prior to bedtime along with Zoloft and I believe these are the only two medicines that he is benefiting from. Thanks for your input.
LFL, Yes, I am weighing the Namenda. I don't want to get spouse off everything at once, but I believe I will do a slow wean with the Namenda in the next few days. He's been on it so long and literature tells me that it's not effective after 5 years. I really don't know how they can effectively evaluate this because of the variables. It's big mean and powerful pharmaceutical companies at their finest NOT! They manufacture this stuff and hold our loved ones hostage to their extortion in the name of "health" and "the benefits out weigh the risks" .....grr....too much coffee this a.m.