Have any of you thought about taking your loved ones off of Namenda, Aricept or other drugs they are taking? My SIL has suggested that I think about it. He suggests that all it does is prolong their life and over time they are leaving us to this disease. Have any of you contemplated taking them off their drugs or have any of you actually taken them off of them? If you have, what kind of a down turn have they had. What was your experience? My husband and I talked early on about quality of life and being kept alive artificially. He doesn't want that. I am having a tough time with this whole thought process.
I have taken my husband off Namenda and truly didn't see much difference. He has declined since taking it away, but he was declining while on it. I don't think it really prolongs their life, just supposed to ease the symptoms, but with my husband it did not help and I do not regret taking him off of it.
I just did a search, because I know we have discussed this subject at length, but the "stopping meds" thread kind of went off in a different direction. There are probably comments spread all over the various discussions about this.
Bottom Line - It depends on what stage your husband is in. By the late stages of 6 and definitely 7, many families opt to stop the Alzheimer meds. because the quality of life is so poor. There really is no sense in taking them. However, if your husband is in the earlier stages, and still functional, the Alzheimer medications will keep him functioning at a higher level for a longer period of time. It has been noted that when someone in a more functional stage is taken off of the drugs, they go downhill faster, and when put back on, they never quite get back to the previous level.
The decision is a personal one. It's a tough one to make, but everyone has to do what they feel is best for their own spouse.
DianeT, Divvi took her husband off on doctors' instructions years ago, and he's still with her. She can tell you more about it. With some people, it might take the ability to do for themselves away sooner, not end their life sooner, but lose the ability to walk, feed themselves, dress themselves, etc. At least that is what we were told. Others who have taken their husbands off of medication are in a better spot to tell you.
After the PET Scan showed my husband has FTD, the Neurologist suggested we take him off the Razadyne ER & Namenda. He is stage 5 1/2 declining fast into stage 6. I did stop the Razadyne, I noticed no change. I have been on the fence to take him off the Namenda. His Neuro, told me that Namenda is the only memory medication that can be stopped & if a decline is noticed, can be started back up and most patients will rebound back to where they were when the medication was stopped.
With the approval of his neurolgist I weaned my DH off both Namenda & Razadyne several months ago. He is well into stage 6 and has been diagnosed with both AD & LBD. I didn't notice too much rapid decline when we stopped. Possibly the loss of coherent speech went down faster than it would have if I had kept him on them, but nothing very adverse. On the other hand, he had been having a lot of anger/agression and severe sundowning. When we stopped the meds that all went away. He went back to being agreeable and loving. To me the trade-off was well worth it. He is still not showing any sign of the anger, etc.
I dont regret taking DH off all AD meds over the course of 5yrs or more. first aricept, then reminyl, then razadyne, then namenda. i was like everyone else scared to death that he would decline into abyss with each drug removed. actually if i had known how much his demeanor would improve off the drugs i would have done it much earlier. the aggression and ansiness were gone and he seemd much more lucid. hes still eating by himself, and walking on his own and laughs and seems to still enjoy the simple things as before. but he has declined into mostly incontinent but i have no way of knowing this would not happen even if he continued the drugs. there is peace again in our home and less stress for sure. its an individual choice each has to weigh the pros and cons. i am glad we made the choice to take him off. divvi agree with gmaewok 100percent. aggression and aggitation went away asap off the meds. the tradeoff for that alone may it worth it.
With the advice of dh's dr, we tried to wean him off namenda earlier this year and I found that he declined rather rapidly. Back on he went. It may have been coincidental but he is still on Namends.
Thanks for all your thoughts. My dh is crossing to stage 6. I will talk with his doctor next time we see him. I just wonder sometimes if it really does make a difference. My husband can still function but going down hill fast.
We discussed removing the meds about a year ago. DH wanted to stop them. Doctor said it was us to us. He felt better when he stopped Aricept and Namenda...and did not lose any ground. As stated above he is declining but I think it is natural progression. He is crossing into stage 6.
Diane. My husband went off of Aricept a couple of years ago. He was not really doing any better nor maintaining. I did not really notice a difference. He has been going through different stages which seem to happen all of a sudden. He is 65 and has has AD for 7 yrs. Actually DH was beginning to have black outs so the dr. thought if he wasn't really improving or maintaining from Aricept, then take him off. Then he went on an anti seizure med which helped with the black outs. Then he had prostate issues. Now he is just on anti seizure and prostate meds. He still walks every day and enjoys eating. I just want him to be as happy as possible under the circumstances. I too believe each person handles the meds differently and it is still too soon for medical science to know much about their effects.
my husband was on Aricept until we could no longer get samples from his doctor. Even when we did get samples and I gave him 2 of the five mil. he did not show as much progress as when he was on the 10 mil. My husband has been off of all Aricept for about two months now because we can't afford it. We are noticing a lot of decline in the memory. This is making both him and me have a rough time. As soon as I get my husband back on insurance, I am going to get him something for his depression. I think this will help him go thru the rapid decline he seems to be in. Should I put him back on the Aricept? Or should we just go with the sedative? How will we know which is best? We have both also discussed stopping the Aricept all together but we did not really know if we should I appreciate all the input on this subject. It will help us make a more informed decision.
DH uses namenda and exelon patch. We get our meds through the mail and I truly thought that we had another whole bottle/container. IL was stunned when I found we had none. Not only that, his prescriptions has lapsed and the pharmacy couldn't fill them until they got the dr's ok. That was on a Friday--didn't get the meds until the next Thursday or Friday. I was really nervous. But, I didn't notice anything at all. I think I'll continue giving him all of them until the first of the year and then have the neuro give him another exam. We could probably tell more later.
This has been a ? of mine off & on for a while...my husb is on both Exelon patch & namenda...he's been declining for 5 years...I have asked his neurologist before about stopping the meds & he said "usually there is a decline and you don't get back to where he was if you re-start the meds"...so, we stayed on them. Decline continues, but he is walking and usually able to feed himself (mostly)...i too consider taking him off the meds, but look @ what others are saying -- okay if they stay on; okay if they come off (mostly)...decline seems to be inevitable, regardless.
With all his doctors approval I stopped Lynn's AD medication when he was in mid stage 6. We saw no decline. In fact like Divvi's husband Lynn seemed more lucid for awhile. It also stopped his daily stomach aches.
When DH was in the psych hospital, he developed a severe rash which the dr's mistakenly diagnosed as a "drug rash" so they took him off of Aricept, Namenda, Lexapro and Depakote. I too was frightened he would decline, but fortunately he's maintained about the same level for 7 months. Each patient is different. DH has FTD and was very aggressive initially when put on Namenda. Seroquel has calmed the rages and sundowning. I do not regret taking him off the Aricept and Namenda.
From all your comments, I am really considering taking my husband off the Namenda. He has been taking it for about 5 years now. The first couple years I thought it helped, however, I am not convinced now. Maybe, without the Namenda his cooperation would improve. His doctor suggested it, but I was the one who was afraid he would decline more...which he doing on it anyway. ??????
My DH is on both Aricept and Namenda - 5-6 years. I had cut the Aricept down to just 5 mg. once in the morning a couple years ago - saw no difference in anything. Then last summer with Dr.'s okay, I cut the Namenda down to 10 mg. once in the morning. Still have seen no difference one way or the other.
My DH was taken off Namenda about 6 mo ago..see no major change for the worse...he is also on Aricept..about 2 mo. ago the Dr. wanted him to change his Zoloft to Rameron....thinking it would make him sleep better...that was a nightmare...I took him off that ASP... he is taking his Xanax 0.5 5time a day...3 during the day..and 2 at night...I think the Xanax is what helps him the most...he is off anti-deprssants (which he was on for a long time) but seems to be doing OK...I think when a person is 87, the less drugs in their body the better.. We know where this monster is heading, its all a matter of time, and trying to give our loved ones quality of Life..Rosalie
I'm in the process of weaning my H off the AD meds right now per doctors recommendation. He has been off Namenda for about a week and a half and I'm now taking him off Razadyne. I will keep the Seroquel and Lorazepam for the time being or until it is not needed. I'm not sure of this but I'm not a doctor so I'm trying to go with what the medical society thinks is best. Good for them that they get to go home at the end of their work day and have a cocktail and think about other things. As we all know none of us is enjoying that luxury. We will see................
Over the last several months, I have had my husband taken off all medication (Razadyne, Namenda, Seroquel, Ativan, etc.). I don't think doing that has made a difference in his rate of decline.
When Lloyd was dxd in January 2009, he was put on Aricept. That same year they added Namenda. When his seizures began in April 2011, the neuro took him off the Aricept and there was not really a change but he was in rapid decline at that point anyhow. For about the last year the neuro has said that the Namenda was not doing anything, but I begged to differ. I tried about a half a dozen times to wean him off the Namenda and his agitation and aggression increased. I started again last week and he has not taken the Namenda for about 5 days now. I start giving him one a day and then drop down to one every other day after a couple weeks and do that for a couple weeks. This time he started with the agitation and the aggression and I just rode it out. I agree with Divvi. I wish I had done it sooner. I think in the past I just gave up too easily and started the Namenda back up again. Lloyd can only walk and at times needs help with that. Everything else needs to be done for him. His speech went first and that started back probably 7 years ago. He comprehends very little and says next to nothing. The dr said he is "end stages" and he is only 62. He still takes liquid Keppra for seizures. The doctor prescribed 10 mls per day and I only give him 3-4 and no seizures. He also takes liquid Neurontin at bedtime - again I give 3-4 mls and the dr prescribed 5. I may ask for something for agitation "as needed". I would prefer to give it when he gets cranked up as opposed to all the time. It took a long time to be brave enough to play around with the meds, but I have been doing it for about 2 years now successfully.
Initially, my husband was on Aricept (at dx) and Namenda (added a short time later). After 6 or so years, he was taken off Aricept because it slowed his heart rate too much. I was unable to determine if this caused a change in functioning, since a major med adjustment was made at that time. Anyway, when I moved him to the ALF 18 months ago, the psychiatrist there said that doctors are seeing a benefit from Namenda in terms of calming agitation. This was apparently not expected, the medication was only supposed to help with functioning. My feeling is that if you are dealing with agitation and can afford to pay for it, Namenda may be another tool to keep your loved one calm. (My husband is also on anti depressant and anti psychotic meds for this as well.) Everyone should please be aware that the Aricept, Namenda and other "Alzheimer's" drugs DO NOT affect the underlying disease and do not extend life span. They are only a band-aid, may help symptoms for a relatively short period of time in some sufferers.