has anyones' lo had trouble with emotions while taking namenda. my dh is crying all the time. this will be the 3rd week of taking it. he has taken it it twice in the past and i feel that it didn't help but made him worse. the dr was aware of this but wanted to try him on it again. he said to give it some time,but i don't think i can. he is so sad and crys all the time. this had gotten better and was not occuring everyday,but now it is an everyday thing. i can not bear seeing him like this. isn't 3 weeks enough to see if this med helps? i just don't think i can give him another dose of this. he thakes razadyne 24mg but dr wanted to try namenda again along with the razadyne has any one else had this problem? jav
No. Never heard of it and I would be so upset if he had this experience. My DH takes Exelon patch and namenda. He's been on Namenda since May 6. (almost 3 months). He's not had anything like that.
I think 3 weeks is plenty long enough and would seriously talk to the neurologist and get him off of it. It dosn't sound like it's doing him any good.
My husband became an instant zombie when he started Namenda...it was horrible...he felt it and refused to take it. On Aricept he was a madman...totally out of control all the time..so both of those hit the road. Now on Exelon patch and it doesn't bother him..does it help? Who knows?
kathi-just a thought-if aricept makes matters worse the diagnosis may not be AD but perhaps FTD. My husband was super aggresive while on arecept and developed all the bad side effects. I got him off of it pdq. Namenda did nothing but strip my bank account. I sometimes think the drug companies are using us to do their long term research at our expense.
Hello Bluedaze...yes, my husband does have FTD..no question about that..meds are harder to deal with for that, apparently. I surely don't need for him to revert to the nasty horrible mad man he was for so long, so hope this continues calmly .
Jav My husband has been on Namenda for 1 year and started off in the "zombie" state and had to cut the dose in half because his kidneys did not metabolize it fast enough. After the dose was cut in half, he did fine. He was very weepy prior to the Namenda and especially so now since the TBI. Aricept made him a very ugly person and stopped it (for the second time) quickly. I think crying a lot is also just part of AD, has been for my husband.
My husband went through a depressed stage, but I don't think his Namenda had anything to do with it. I think that they go through depressed stages when they are at a certain point in the disease where they can understand what is happening to them and know there is no way out.
But in your husband's case it sounds like you can time the depression to when he started the drug. And it didn't go well either of the other times you tried it. Time to tell the doctor that you aren't going to be using this particular drug.
Years ago they put me on Lipitor. I had massive stomach cramps on it and called into the doctor's office and said I was going off the drug. The "nurse" I spoke to told me I HAD to keep taking it. There just was no way. Several days after I stopped the craps stopped too and there was no permanent damage. About 6 months later with a new doctor I was put on a different drug. I've been taking that one with good results and no side effects for more than a decade.
My point is that if you are dealing with a doctor, or doctor's office that is not listening to you when you explain that the side effects outweigh any good the drug is doing, you need to either convince them to listen, or get another doctor.
My husband had bad side effects from several meds he was tried upon and the first couple times I called the neuro he said to stop them and I have did so since. I see no sense of continuing with a med that makes a zombie out of him or confuses him more.
jav, depression is one of the known side effects for namenda. It is fairly rare, but it does sound as if that's what's going on with your husband. I'd try what Gay suggested, cut back to a lower dose and see if that helps. If it doesn't, try stopping it altogether. (What side effects did he have the first couple of times? Why does the doctor think the third time would be the charm? Namenda has done wonderful things for my husband, but I'm fully aware it isn't right for everyone!)
my dh got worse the other times he took namenda. he was depressed,cried,and didn't want to be around anybody. i realize that this is going to happen sometimes anyway,but things just got worse when he took it. the dr thought he might respond differently to it ,taking razadyne with it and the other 2 times he took it he was not on razadyne. i have taken him off namenda. i am not going to put him through that sorrow again. he was just sooo sad and was crying all the time. this has happened before and sometimes often,but with namenda ,it has just been worse. i know meds work differently for some people. he is just one that can't take namenda. jav
Sunshyne, my husband has been on Namenda (along with Razadyne ER) for well over a year, and I can see no difference with him. The doctor said he is probably in the 30% that these drugs don't work on - but he is to keep taking them anyway.
Mary, sounds as if the meds are working just the way they're supposed to. No difference is much better than declining! We were truly blessed that the namenda actually improved my husband's symptoms.
(You do know that the generic form of Razadyne will hit the streets in December, right?)
My DH was on namenda, which has a side effect of confusion.... he became even more confused, and when I stopped the medication, he did not toatally recover where he was. Now of course, he is worse than he was when he took the nameda. all these meds have side effects, you just have to be alert for them.
Prepare yourself for a horrible question/statement from me...I can't control myself this morning and I have been wanting to say this for weeks. Why do you want your DH on these drugs that cannot make anything better??...Maybe it can just keep everything the same (horrible) and drain your pocketbook..who really knows...AND..why wouldn't you almost want him to get worse and get this over with.
How horrible for me to think these thoughts let alone put them in print. I just want this over...got to go cry now.
Judith, that's not a horrible question, it's loving and compassionate. The answer is that these drugs help slow down the progression of the disease, delaying the time when our spouses will suffer the worst symptoms. And -- if we are lucky -- perhaps something more gentle will take our loved ones before they suffer the worst that these diseases can do. These meds (aricept, namenda, etc) do NOT prolong life. In other words, the AD meds can be considered "compassionate care".
I know how you feel. Watching my first husband die of cancer was absolutely horrible, and I felt so very helpless. I would have done anything to ease his suffering. The only things I could do were to refuse a feeding tube, and insist on enough morphine to keep him sedated -- which also made his breathing very shallow.
Judith, I don't think you are horrible at all....I think there are a lot of people who feel the same way, but are just too timid to put their feelings into words. I was like you...when I saw that the Aricept was not working, he didn't take it any longer...he was too far gone by the time Namenda was introduced, but I don't think I would have given it to him without more clinical proof that it was worth the hassle and the expense. I do know someone who has tried every experimental drug, treatment, theory, etc. that comes along....the LO is still alive and moving, but in a NH and has no quality of life. They have traveled overseas to visit clinics, doctors, tried drugs that are still under investigation here but legal in other countries. (Money, obviously, is not an issue). I am thinking there is the thought that maybe if the LO remains alive a treatment may come along that would return some function, or maybe it is just an undying love and devotion. Who knows? I just know that I am pretty sure I would not go that route.
Thanks gals for your understanding and support. Without this site I probably would be the one in a NH by now in a fetal position and probably enjoying it.
Getting serious my major problem is the difference in our ages..DH 61 and I am 74. His two sons don't even contact him since we gave them the information about his AD and that makes me so mad I could scream. We live in CAlif. and they live in Illinois. My DH has always said that if he got really sick and needed to go to a NH etc. he wanted to go back to Illinois. Ok..I have no problem with that. The problem is what if I get really sick.??..then the total responsibility for both of us will fall on my daughter who lives about 40 miles away and has major medical problems of her own. My Dh can't seem to grasp why that is a big problem. He thinks he can just drive or fly back to Illinois by himself (no way) and there would not need to be any advance preparation. And, no need to really worry about these things because his AD is very minor if he even has it..duh.
Judith, I would think we have all questioned exactly your thoughts ourselves at one point or another. I've been reading some of the news about "rember;' the new drug and the trials about how after 19mos the group who took the drug didnt have any AD decline,whichwas causing some optimistic good vibes in the AD scientific world-MSN also has this in their news. but i had to question myself too, hypothetical but may become probable?-If they discover a drug today that positively would stop the advancement of AD (pray), but NOT reverse the previous damage done -how would we decide if we would administer this to our own LO? I wouldnt want to have my DH in this stage forever with the damages he already has. but then to see the further decline could be stopped. ? ugh! this would be a super debate. of course those who would be just recently dx'd would profit the most we know. but would it be feasible to have a miracle drug potentially out there and not have us be able to use it? even if my DH would be in early-mid stages, would you want to stop the progression and have them in that permanent state as they are for their lifetime? input?? this scenario may be on the horizon..divvi
Absolutely right, Sunshine. And I agree, divvi, I wouldn't want mine to stay suspended in the stage he is now. I think if someone has a family history of AZ and is just starting to notice a bit of memory loss, etc, if they could be stopped at THAT stage, they might well elect to take drugs to keep themselves suspended in time.
Judith, if you go back in old discussions, you'll see that many of us here are quite comfortable with just letting things take their course , and giving them - and us? - the drugs needed to stay calm (not necessarily sedated) and comfortable. It is a long long road in any event, and I don't think many of us would want to make it even longer!
Strange that we are having this discussion and I just had a call from my husband's neuro and BlueCross/BS will not approve him for Namende because he is not that bad....duh. I thought these drugs were suppose to slow or stop progression and they want to wait until like "who cares" or who even wants it stopped or slowed when he is in a worse state? As you can tell from my previous comments I am having problems with this stage. He is on Razadyne and has been for about six months and is continuing to go down hill. He has no problems with the Razadyne but I certainly cannot say it has helped at all.
Judith, even though I am much younger than my husband, I still worry about what would happen to him if something were to happen to me. I looked for a private fiduciary who is a certified guardian/conservator, who handles clients with dementia -- the one I found has staff of her own (so I'm not worried about what happens when she gets sick) and also a group of professionals who handle the very wide range of services that might be needed -- in-home or nursing home health care, financial, legal, you name it. She could even give me references, since she works with clients whose family live too far away to handle the day-to-day care -- I spoke with the family, who raved about how relieved they were to have someone right there, sorting the mail and paying the bills and keeping an eye on the NH, whatever. I'm setting up a trust that names her to care for my husband and be the trustee if something happens to me. She will have a file with everything she needs to know -- his doctors, lawyers involved, finances, copies of all important papers, and so on and so forth.
The first time my husband and I visited the AD Research Center for the longitudinal evaluation, they made an appointment for me with one of the social workers. I was still pretty distraught over things that were going on, and started to cry. The social worker -- who has written a book on relationships between caregivers and their AD spouses -- asked me what on earth else I had expected, marrying someone 19 years older.
I wish I'd been rude enough to say what I really felt ... my first husband died when he was 54, so the age of the spouse doesn't really make that much difference.
If I run into her again, I do believe I'll mention your situation.
Judith, the problem with getting the OK for namenda may be that it has only been officially blessed for patients with moderate to severe AD. Initial trials to evaluate efficacy for mild AD have been inconclusive. So have a little chat with the doctor about how your husband's status was represented to the insurance company...
I, too do not see the sense of keeping my husband in a state of suspended animation. He doesn't know me, himself or anything around him. If he was in his 40's I would do anything to keep him stable in the hopes for a reversing drug. That wonder drug does not appear in the tunnel ahead. Thanks for a very honest question.
I agree about not treating illnesses just to keep the LO around longer. But I did see some improvement when my husband went on Namenda, and I think he would be a lot worse without it, so it makes sense in his situation.
I, frankly, wonder if we will be treating his other illnesses much longer. He takes a handfull of pills every morning. The time will come when not only will the Razadyne and Namenda be stopped, a lot of the other drugs will be stopped too unless they improve his quality of life at that moment in time.
my dh is 52 and has eoad. i am just not ready to give up on him,i can't do it. i love him too much. we have an app at the university of ky. center for memory impaired. our app is aug 18th. i feel like this is our last hope,to see if something else can be done. sometimes i can except his dx and sometimes i just hope and pray the drs will find that it is something else that can be treated. deep down i know better,but sometimes i get in this really hopeful state. i was so thrilled to get the app at the memory clinic,i was just estatic and still get that way when i think about it. i know they can't preform miracles with ad,but i get such hopes. what is wrong with me? it's like this one last big burst of energy and hope rolled it to one huge emotion,it's like i am overjoyed and i want to just shout to everybody that we have that appointment and things will be better. GOD,help me! i am just so emotional,i want to cry and then i want to laugh. am i going crazy? now i want to cry. jav
jav...me too. I'm not ready to give up on mine either. I keep hoping something will be found to help or they will find he has something besides AD, something treatable. I read about all the new drug trials but the medications they're hopeful about won't be available for another 2 to 4 years. We need something NOW!
Please let us know how the app. with the memory clinic goes.
My husband also takes Namenda & Razadyne ER, with no problems. He still has declined each year, however, I always think what would his condition be if he didn't take these medications.
My husband also takes Namenda and Razadyne ER with absolutely no problem. He has been on the for almost 3 years. He has declined to the point of not knowing me, needs help dressing and with the bathroom as well as showering and shaving which I have done now for a long time for him. Walking and getting in and out of the car is getting increasing difficult. Monday we have an appointment with his geriatric doctor. I know in my heart that there is nothing she can do to reverse anything or even make it a tiny bit better. My concern now is with him taking so many pills. He has hallucinations ALL the time. I do NOT want any medication for that. I just use my "mother's" mind set and let them go in one ear and out the other. Why take more pills and be zombie-like. Just want to know that continuing the pills is the right thing to do or if they are doing nothing then we should stop them. If we stop them what will his quality of life be like??? So many questions. Sally
My husband has been on Exelon and Namenda for about a year without any problems. In spite of the cost I feel that if the progression of the disease is delayed it's worthwhile.
I can understand those of you who are trying so hard to look for a cure, especially those of you dealing with EOAD. I'm not there with you, but I hope what you are doing will work for the next generation of sufferers. Because we are dealing with an EVENT-caused dementia I would never put my husband into any trials. But for those of you dealing with forms of Alzheimer's trials make all kinds of sense.