I have a call in to DH's neuro, or at least his nurse. I need to know if I can cut out the morning dose of Namenda. DH is sleeping way too much in my opinion. He got up at 9.15 this morning and went back to bed at 10.30. He will get up for a while and go back to bed again and again after dinner and then to bed at 8.00. I don't know what he will do when we start moving and have to wait for furniture and everything else is moved to the new place.
Just had a call from the neuro's nurse. I can cut out the morning dose of Namenda so I will see how DH goes over the next few days. I also checked WEBMD and one of the side effects is falling so maybe his falls were caused by the Namenda.
good idea to cut the dose and see if its the culprit. these are strong meds and even tiny doses can cause some undesirable reactions in delicate persons. good luck with the move! divvi
jean21 - I did the same thing with DH after speaking with his doctor. He was sleeping 12-15 hours a day, and he is sleeping less after cutting the Namenda. Good luck!
Diane, One of the side effects mentioned on the WEBMD was hallucinations so I am hoping and praying that cutting the dose will help with that also. I just don't handle them very well.
Even cutting down to 1/2 pill at night still did not help my husband. Only going off it totally was he back to having a clearer mind, exhaustion gone, and more alert. He says he feels better than he ever has. I think a lot has to do with the rain stopping and sunshine. When we met with the doctor on Monday, her reply to stopping was something like 'it is not for everyone'. She will go for trying but I don't think she has a lot of confidence in the current AD drugs. She specializes in Alzheimer's and is has funding from the Alzheimer Assoc. for research. I like her because she is so supportive of trying new things: if you find something that you think might help, try it.
Keep us up to date on how he is doing. You may have to make the choice like we had to: quality of the current over quantity in the long run. We chose quality now.
Charlotte, I wouldn't be against stopping the meds completely if it would make DH more "with it". Sometimes I wonder why I even try to talk with him. I can tell by his face he isn't processing what I am saying and comes back with something that has nothing to do with what I said. So I have to repeat and maybe repeat again. We go back to the neuro in September so if he hasn't improved by then I will bring it up at that time.
I posted under the OT topic of devices, helping etc. about having a new bottle of Namenda. If anyone is on it and would like it, I will mail it to you. I hate to through it out - it hasn't even been opened.
Charlotte, Won't the pharmacy take them back? I returned pills one time and the pharmacist said she would give them to someone who couldn't afford them.
I don't know - it is through the VA. The government is not great at taking things back. I know there are those here who struggle to pay for their drugs, so I would rather send it to them. If no one wants them I will see if his sister is on it and send it to her daughter. She is on medicare and I know her daughter spends a lot each month on RX and supplements. I will try here first
Today was the first day DH went off the morning dose. He got up at 8.00, helped me load my car trunk up with stuff for Goodwill. He went to check mail a few minutes ago and said he felt woozy coming up the steps so I suggested he lay down which he has done at 12.30. I never expected that getting off that one dose would work so fast, he was up for 4-1/2 hours! Yesterday he went back to bed after having been up for 1-1/2 hours.
Charlotte, He didn't stay in bed long said he couldn't sleep. He tried again a while later and the same thing, couldn't sleep. So I imagine he will sleep tonight after he takes the Aricept and Namenda. Just hope I can get used to him being around most of the day. LOL
Charlotte,If you still have the Namenda I will gladly buy it from you. We are both in the donut hole on Prescription insurance so are paying for full price for everything.Namenda has een a lifesaver for us,my husband has stayd steady for the 1 1/2 years he has been on it.Sleeps 10 hrs. ay night but goes all day.He takes Aricept with it and a low doze of Zoloft.Don't know how long he will stay on this plateau but am thankful for whatever time it lasts.My email is myhart7@gmail.com
I don't think it was a good idea taking DH off the morning dose. Yesterday was the first day and he couldn't sleep all day and half the night. I was up at 5.00 and DH got up 15 minutes later. He just drifts around and I noticed he started jerking again. I split one of the pills in half and he took that, so right now he is in bed, maybe he will get some sleep. If things don't change I will put him back on the 2 a day. I don't need him drifting and complaining while I am trying to organize things to get ready for the move.
Jean - I had decided to take my husband off Namenda and Aricept because he was declining so fast and I didn't think it was helping. My husbands neurologist told me that I could expect a big decline but I couldn't imagine anything faster than I was already seeing in him. His neurologist was right. His steep progression went even faster. It has taken 6 months plus hospice care to get him stabilized on his new meds. He is fine now but the journey was very tough.
DianeT, I am now splitting the morning dose of Namenda in half. He took half yesterday and half today and seems okay. For the one day he was off the AM dose he kept saying his legs felt weak and I don't think I could stand another trip to the ER. When we are moved and settled in I might try again.
I’m confused about what I read here about the effects of Namenda. Many of you are saying that after reducing the dose or eliminating Namenda their LO is “much more alert and was nearly coherent when carrying on a conversation”, “much more alert and enthusiastic about things. Conversation is improved. He's actually been feeding himself with utensils.”, “side effects of extreme exhaustion, confusion/brain fog, and vision changes. These went away after taking him off”. My DW has been on Exelon (6MG 2X day) and Namenda (10MG 2X day) for at least five years now. I’ve been afraid to reduce or stop taking these medications because it might make things worse (she is late stage six) but I don’t think that it’s helping either. She sleeps well at night but also sleeps or dozes all day unless I or someone interacts with her. I thought the medications were suppose to help, not make it worse! So I have been thinking about reducing the Nemenda to start with and see it makes any difference. Not too much talk about Exelon here except some have mentioned that their LO is also taking it. What has anyone noticed about the side effect of Exelon and continuing taking it, or not?
Jerry, my wife is also late stage 6. She was on Namenda and the Exelon Patch. A few months ago her PCP suggested decreasing, then stopping the Namenda. I saw no change. She then stopped the Exelon, again with no obvious change. I think by the time they reach stage 6 the medications are not really doing much. I suggest you check with her doctor about decreasing or stopping the meds.
My hb takes Namenda 10 mg 2x a day and wears an Exelon patch 9.5. I don't know whether they have any affect on him or not--none that I can tell; so I asked the neurologist about stopping. She said you never know if they'll get worse, and I've read some here that some dementia's were worse and didn't improve when put back on these meds. So, we're still paying through the nose for them (donut hole). He's getting worse all the time anyway. Next week we see his gp, and I'm going to ask again. He doses off and on all day and night; wanders around the house.
All I know is my husband was having frequent hallucinations and once on Namenda they went away and have not returned. I'd be very afraid to stop it; maybe his hallucinations wouldn't come back, but I feel the Namenda has helped tremendously on that front.
Jerry, as you can tell by reading here all our spouses are different. After hearing the pros and cons, only you can make the decision whether to stop the meds or not. (yes the doctor can too) My hb is in the mild/early moderate stage. He is still high functioning. The exhaustion he experienced was when he would walk the 50 feet to the shop on a slight uphill incline coming back he was huffing and puffing. We both noticed he was having problems being more confused. The vision change we did not find out about until he was off it. He had gotten his new glasses (went on the Namenda after the exam) and they were blurry. the day we went to have them check he said everything was clear. That is when I researched, again, the side effects and found 2% had the vision changes. By the time he got to full dosage is when I figured out side effects of Namenda were fogging brain/confusion and getting or exhausted easily. I called his neuro and she said to give a couple months which we did, but he did not like having the energy to even tinker in the shop nor the brain fog so we choose quality over quantity. His dad dragged on for 25 years and neither of us want that. By the way, his dad was on no RX until the last 9 years when the VA put him on Namenda when he went into the AD unit.
This is one of those hard decisions we all too often will have to make. Some drugs work for some and not for others. Until you take them off you will never know. I also think the sleeping is common at the stage your wife is at.
some of the older members will maybe remember i was one of the first ones to take DH off all medications for the AD. namenda, aricept, and razadyne all casued my DH undo side effects. once he was off all meds he was more alert, able to use utensils better and seemed much improved comparing while on the medicines. many we know do not tolerate alot of these potent mind altering drugs. if i had known he would respond like that i'd have taken him off much earlier. its a hit/miss some do better some decline. everyone is different. divvi
I am with Divvi and Marsh. Everyone assured me that it was OK, that after a while, Namenda & Aracept do not really affect their well being. I was told that they are effective in the early stages to delay the progression. Think about it...it's not a drug for "healing them". We knew when it was time to stop Namenda and Aracept. No regrets. Nancy B*
DW has been off Namenda for 3 months now and I have noticed that she no longer takes an afternoon nap. Other than that I do not see any difference, she was on it for 2 yrs. Still on 10mg Aricept wondering if boosting that will help, or if that just a drug company ploy to keep the generics off the market.
DH has been on Exelon for two years and counting. He reacted badly to the first doses of Namenda (aggression) so I didn't carry through with it. When I tried to take him off the Exelon (9.5 in capsules per day) his old anger returned, so I put him right back on. He's also on Risperidon for anxiety control and that has been a life-saver.
I took DH off Aricept about a month ago then Namenda 2-1/2 weeks ago. No bad effects at all, and he seems to have more energy and not so much fogginess. He also is walking better. Don't know if it's the result of taking him off these meds, but I do know he is no worse. Even with this trip we just had to make, he was no worse and now seems more alert. He had been on Aricept for almost 7 years and Namenda for 5.
Oh WOW! It seems that when I have a question I look here & POOF! someone is dealing with the same issue. My DH has been on Aricept for over 4 years & Namenda for about 4 years. I have to get a new script for Namenda from our doctor & I have been thinking of just taking him off of it. He won't go back to the neurologist so our family doctor prescribes it. I called the neurologists office to get his records & I spoke to the nurse/practioner & told her that he was still on A & N & she said that was good because if he stops taking them & declines then he can't get back to where he was if he goes back on them (I know that & didn't tell her I was thinking about taking him off Namenda). So now I'm not sure what to do. He actually hasn't had any for over a week. Any thoughts anyone?
The usual way to take someone off Namenda is to taper down, just as you tapered up on starting. However, if he has been off it for over a week, you might as well consider it stopped.
Thanks marsh. I feel so lost since he won't go back to the neurologist. I keep reading & hearing that Aricept & Namenda aren't effective after so many years, so that is one reason why I'm considering discontinuing Namenda.
Elaine, I'm not a doctor (like Marsh) but I would think that if he's been off Namenda for a week and you see no change, it won't hurt to discontinue completely.
Jeanette, Thanks for your input! Unfortunately I have actually seen a decline in his behavior. I wouldn't have thought that it would have happened so fast, but who knows. I know that if I restart the Namenda he won't go back to where he was, but then maybe he will stay this way longer. He has been paraniod (people are stealing from me, why don't you love me, ect) but now it has esccalated a bit & yesterday I believe he was having halucenations. I'm considering calling our family doctor to get some Seroquel for him (I believe that is the medication I've read about on here).
Yes, many have had very good results from Seroquel. But if I were you, if you've seen a decline I'd try going back to the Namenda too as soon as possible.
Jeanette, Yes I have been thinking about that. I just ordered some from the mail order company we use. I guess I should find out if I should start him out on a lower dose.
I wonder why we continue the medications when so many here have said that their LO s do so much better when taken off the meds? What good are the meds anyway? My DW has been on Exelon and Namenda for over five years. With her doctor’s permission I have tried to reduce the meds but there has always been another setback that caused me to return to her normal doses. She did have a UTI that caused a lot of behavioral problems that didn’t go away after treating the UTI and so her Dr. prescribed Seroquel, 25 mg up to every four hours as needed and I’ve found she needs it every four hours or her behavioral problems return.
Jerry - there is always the chance that the drug is helping them. I think statistically less than 50% is helped by the drug. How long it is effective is an unknown since the drug trials only do 18 months. My hb is only on galantamine 16 mg. We are one that tried the Namenda but the side effects were more than we wanted. If he had stayed on it, I believe he would have been doing nothing but sit in his chair. He does that now but still can drive safely and travel.
My DH is on both Exelon and Namenda and it think it does help him..He seems to be on a level plane for quite some time..no real noticeable changes since the ones that got him the DX in the first place. He was just in the hospital and I made sure he got his meds and he did will.
My DW is on namenda and 23 mg aricept. she does sleep a lot but when she is awake, she is good. sleeping does not bother me as i can get some housework done. when awake she wants me close at all times so sleeping is good. house suffers but who really cares. good luck to all on your journey. your support has meant a lot to me as we travel on our own. she sees her PCP every three months and ther changes arer visible but not too rapid. praise GOD.
My FH has been on Namenda for approximately 2 years and Seroquel was begun not quite a year ago. The change in him is remarkable since the Seroquel was begun. The paranoia was frightening, not to mention the attacks on me (vocal, not physical). He is now on 50 mg in the am and 50 mg in the pm. I wouildn't think of stopping them.
My DH has been on Aricept and Namenda for three years and it really made a difference. His cognition improved dramatically after starting on the medication and his decline has been very slow.
We started my dh on Namenda about one month ago. The only thing I see that has happened is that he is not hungry as much, he drinks less and he is more mobile. Before we began this he had stopped walking outside except about twice a week. Now he is constantly walking and getting lost. He has been wandering and getting lost for over one year now, and it was so nice when he was not walking as much and getting lost. But now that he is mobile again, I am constantly worried again that he will get lost. One day I had to go find him 3 times. It was a lonnngggg day. I do not see any cognative help or decline caused by the med. I am wondering if I really want him more mobile again, due to the wandering issue, but I don't know what I am going to do. How right would it really be to take him off this med and have him become less mobile like he was before the med? that is a question I don't have an answer to...... always something for us to ponder.....Any suggestions would be appreciated.....
Question: is he safer now or before? If you have seen no cognitive improvement or stabilization, then the drug MAY not be working. But you say he is back to wandering which means he is in danger. It is a tough decision because if the drug does stabilize him, then taking him off could have a speeder decline. On the other hand, if the drug is not stabilizing him except it seems to be improving his mobility which is putting him in danger due to wandering.
We had to make that decision to since my hb was having negative side effects - leave on or take off. I believe if he had stayed on he would not still be driving or able to travel. For safety he went off - why walk around in a fog sooner than you need to. My FIL was a wandering and it is dangerous as others have found here.
Only "dementia" drug my hb now takes is 1 10 mg Namenda in the a.m. I can tell no difference in behavior and will ask dr. to stop it on next visit, or I'll just not refill when present supply runs out. He'd been on "alz" drugs for 6 yrs (he has vascular dementia), and I think he's followed the usual path of decline for the whole time.