Our neurologist pretty well washed his hands of us. My last conversation with his assistant went like this "Dr. So and So is still willing to follow your husband's progress but he doesn't have anymore hat tricks up his sleeve. There is nothing more he can do". When talking to our PCP today I stated that I would like to stop the Namenda because he seemed to get so much worse after it was started. He agreed that it might be a good thing to try stopping it. I have read several threads on the subject and know that others have stopped it, some with good results some with not so good results. What I would like to know is how long after stopping it did anyone notice a difference- good or bad?
My DH was taken off Aricept and Namenda at same time. Lowered doses for 3 days, then stopped. This was with a doctor controlling it while he was in the hospital for unrelated illness. He has been better without it...seems more clear. He is in late stage 5 or early stage 6. I may not work for everyone but sure did work for us.
G has been taking 10 mg a day for several months..more made him a zombie and refused to take it...I can't say he is any better taking it or not..each day is different. It all seems to be game playing..win some and lose more.
These meds made Lynn sick, yet I still felt he should stay on them. They never did help too much, perhaps he was too far into AD to make a difference. We took him off all meds and he did much better within the week. He didn't have the massive decline many mention, nor did he seem clearer...... he seemed the same. But, his tummy stopped hurting and he ate better. Everyone is different, so their reactions will be as well.
I was careless in renewing the prescription for Namenda and he has run out. Ive placed the order but in the meantime have cut him from 10 2x a day to 1x a day. This is the second day. I don't notice any difference at all. The refill (by mail) should be here Wednesday or Thursday.
I'm glad someone brought this up because I was getting worried.
I enrolled my wife M in a home care hospice program last week. I'm phasing out Razadyne this week and Namenda next week as part of switching over to hospice style medications. She was taking 16 mg of Razadyne and 10 mg of Namenda daily. This week it is 8 mg of Razadyne and 10 of Namenda. Next week it will be no Razadyne and 5 mg of Namenda. I'll post the results here when she is off of them. She is in stage 7 and barely able to get out of bed. She was diagnosed with AD in 2002 and has been on Aricept, then Razadyne and Namenda ever since.
it could take a week to two to see behavioral or cognitive changes. the drug has to leave the body totally. and if you are giving lower doses, it could take 7-14 days after the last dose.. if you come off the drug and decide to go back on, the level of function/cognition may not be what it was. that said, there are many people who get no help from namenda.
Like Nikki, neuro and I decided to take DH off namenda back in jan to see if some of the side effects we were having was from the drug. turned out it was not, but DH was much calmer and easier to manage and began eating much better and smiling more. i am of personal opinion that depending on what form of dementia they have these drugs can make them better or worse. ie-FTD..lewy body, etc..i didnt see drastic decline either but in verbal speech and some reading issues. other functions like toileting and eating alone and understanding commands improved greatly. neuro didnt wean off namenda either, just off it that nite.. i am happy with the decision so far-divvi
My DH went on Namenda some time ago, and I immediately saw more confusion. He was still driving at that time, and couldn't find his way for the first time while on Namenda. side effect of namenda is confusion. We took him off, and he regained some of where he was previous to taking it. Now of course, he's much worse than he was when he was on it, but that's the natural progression of the disease.
Great question. My DH has FTD but seemed to be doing well on Namenda and Aricept. While in the hospital he developed a horrible skin rash, so the Dr. weaned him off of both to determine if hey were causing his rash. I was very reluctant to take him off either drug because I didn't want his cognition to decline, but within a week his cognition improved, his agitation/restlessness/aggression became controllable and he was actually much better than when he was on both drugs, much to my surprise. His agitation/aggression actually could now be controlled well enough for him to return home. It was a very agonizing decision because I feared he would decline further, but happily he has improved. Very individual reactions, so you won't know until you take him off. Good luck, let us know.
LFL, humm..thats strange too my DH developed that rash yrs ago after being on aricept at first. and he'd been on it awhile then boom, he had ultra violet lite treatments from dermatologist and every sort of attempt to clear it-it definately cleared up after he came off aricept..same thing with reminyl then the namenda-each develped after time some unwanted side effect...he also is much better off the meds now..glad it works for you, Divvi
When Claude went on to Hospice about 6 weeks ago, the hospice doctor took him off his Namenda (10 mg) twice a day and Exelon (6 mg) twice a day as well as magnesium. We noticed a definite change in him within a week or so - sundowning, agitation and wandering. They put him on Depakote which made him much worse.
I finally requested that he be put back on Namenda and Exelon and he is starting a graduated dose of both until he is back to full dosage. He is also back on magnesium and we have noticed a definite improvement in him. The wandering and agitation is much less.
Some people have no problems going off both and others do. He was one that did.
I don't know what the magnesium was doing for Redbud's LO, but I was put on it during a neurological exam. I've got dead and dying nerves in my legs and my night cramps were one of my symptoms. The doctor looked at my drug list (I always give new docs my drug lists even if I'm just there for some kind of testing) and he spotted two drugs that lower magnesium levels as one of their side effects. And yes, the cramps had gotten worse about the time I was put on the second one. He put me on an over the counter form of magnesium on the spot.
Results, I still have a numb leg, and dead and dying nerves, but I no longer have night cramps in my feet. Most of the day cramps are gone as well.
Low potassium will also cause those leg cramps, Mawzy. My daughter went to a Homepathic Physician the her potassium level was WAY off from what it should be. In her case, she was drinking a lot of coke and the Dr. told her that was leeching the potassium from her body. She quit the coke and takes potassium pills and the cramps have stopped.
I called our PCP this morning about DH having so much worse fatigue lately and suggested we have his blood tested for the minerals but they called back and said he wasn't do for another test until March.....I am thinking I may buy a bottle of over the counter mag/pot. and give to him for a week or so. May just be the diseases but I thought we should test to be sure. He is not complaining of leg cramps but his ankles are almost black mornings when he gets up then improve during the day. I don't think it would be called mottled. I may have a Hospice Nurse I know stop and look at his feet.
I don't know exactly what magnesium does. He was in the hospital in 2004 for an angioplasty/stents. He was agitated, trying to get out of bed, wanting to leave, etc. A blood test showed low magnesium so they gave him a magnesium IV. It was really weird - as the drug entered his system, you could see him calming down immediately and became rational. He had three magnesium IV's during his stay, and his cardio put him on over the counter 250 mg twice a day since.
The bottle I have says it helps nerve and muscle function. But for him, it seems like it's a calming med.
ehamliton, My Dh's Dr was against me taking Dh off of namenda but I was sure that it was the culprit to some of the issues that had started at the same time he started the drug. So with out the doctors help, I decided to at least try taking him off, figured I could always put him back on. I started backing him off just as (only backwards) as the instructions are for starting the namenda in the begining. Within 4 days I started to see that I was right. It was the cause of the fog he was in (more than the everyday AD fog). So for him it was the right thing to do. Over the course of a week and a half he seemed much clearer. If you don't see a difference. you can always put him back on it if you wish. Rk
be careful with postassium supplements. too much can cause severe issues ( hyp0-or-hyper--something or another:)with the body just like too low can. my DH was on K packets to supplement for yrs while on certain BP meds and had to be tested every few months to make sure the K levels werent too much or too low. his levels were contantly low and it caused him severe problems. so dont take it without dr supervision..on the other hand my DH last blood work showed low magnesium as well. on centrum silver and so far so good. blood work again in march..Divvi