After a Neuro visit last Tuesday, G's Namenda was increased. He has FTD,and has been on 5 mg a day (our choice). His dosage was increased to 10mg AM plus the 5 mg PM. By friday he had started getting upset over nothing..Saturday Mr.Nasty came to call, and today (Sunday) he is beyond awful...anyone out there have similar reactions? He had the zombie reaction before when placed on this stuff..at a larger dosage, thus the lower dose before this latest effort. I won't/can't deal with this behavior and stay sane. I already cut the dose to 5mg. twice a day to see what happens. He has a Cat scan in the morning to check progression..we'll see. I think these damned meds are just toxic to some people..he has never EVER had a reaction to any meds before these drugs...his system doesn't seem to be able to deal with any of them at medium or full stength. Is he the only one? I will just stop them before living like this.
kathi-our husbands with FTD don't react in any predictable way to medications. Except for Seroquel my husband was in constant rages. Treating them with the usual AD meds does not work. Sorry for your grief
I hear repeatedly on the Alz.org message boards that people whose LO's become diagnosed with FTD were often started on the usual Aricept and Namenda, then start to do react badly on those two. Oft times that is when they are positively diagnosed with FTD and not typical AD.
See when my Dh was diagnosed with AD the put him on Raz and Namenda. Didn't notice anything with the Raz but once they started him on the Namenda I could see a huge and I mean huge difference. I took him off of it. Had to decrease it just as they increase it. Best thing I ever did. Scared the hell out of me. Within a week of being off of it, I started to see him regain a little clairity. I have read a few others having simular issues. Before stopping you have to decrease him off of them just as you started him on them. You can't just stop it, cause of what type of medicine it is. So ease him off of it if you decide to do it. Dh doctor didn't agree with me, but like my SIL who is a nurse told me, His Doctor isn't with him 24/7, She also told me that if things didn't get better after a couple of weeks off of it then I could always have him put back on it. For my Dh there was a huge difference getting off of it. I just did it backwards from the directions for starting the stuff. My Dh didn't get nasty but the zombie and just plain being so lost in space was not fun. Talk to his doctor and see what he say's, you may get lucky and he will agree with you. Best of Luck! Rk
Kathi, i cant tell you the differnce it made getting DH off all meds last jan over a yr now. hes docile and easy to manage like sunshyne says like a lamb personality wise. (except his time in the pm for hooligan:) maybe your dr would be willing to try the seroquel like so many use here with the FTD-you are very right, some folks just dont tolerate these meds in any doses, mine was one as well and neuro clearly stated he now knows not all AD patients should be rx'd them =divvi
I think you had emailed me that the doc was going to up the Namenda dosage, and it didn't sound right to me. So today I got out one of my books, "Practical Dementia Care" by Peter Rabins, Constantine Lyketsos and Cynthia Steele. It is a really good reference written for medical professionals, but in language laypeople can understand. I particularly like the chapter 10 on medications. Anyaway, the books breaks down the meds for dementia patients into 3 categories: 1. For reversal or stabilization of the underlying disease. 2. To improve cognitive symptoms. 3. Treatment for noncognitive neuropsychiatric symptoms of dementia. (I think this is where the problem behaviors/personality changes fit.)
An example of category 1 would be antibiotics for a chronic central nervous system infection. Unfortunately, for AD and FTD, there are no disease-modifying drugs available now. Examples of category 2 would be Aricept and Namenda. An example of category 3 would be Seroquel, an antipsychotic that is used to control aggression.
So here's the deal--why would the doctor be increasing a category 2 drug, when the issue at hand isn't increasing cognition, it is controlling undesirable behaviors/personality change? It would seem to me that a drug from category 3 (of which there are many) would be what he would prescribe. Based on this, I'm not surprised that your husband had a bad reaction when the Namenda was increased.
My husband was initially put on Aricept and an antidepressant, later Namenda was added in. When anger issues surfaced, his doctor added an antipsychotic. He has AD, not FTD, but this progression has worked well. Hope this helps.
Thanks one and all, as usual. We had the CT scan this morning, and I did decease the Namenda. We'll see what happens. Next week is the Neuro appt. to check out the CT scan, and I will talk with him then. I thought I'd just suggest that Garv move in with him for a few days! All this is weird as I had been thinking that I noticed an improvement with the MCT Fuel and oil he has been taking....now this set back. I WILL NOT deal with the Nasty bit again...my sanity is worth something.
Claude never had any problems with the Exelon and Namenda. When he went on hospice, the doctor took him of both "cold turkey". After just a few days, we noticed he seemed to go downhill, so requested he be put back on them.
We had to start out with the low dose and then increase each week or two. He's now back on the same dosage he was on, and he seems to be better.
I guess we're lucky, but he never has had any problems with undesirable behavior. He always has been a calm, laid back person and he's the same now except no memory. His long term memory seems to be getting worse.
Along with AD and Parkinson's, he has congestive heart failure. His heart is failing. His cardiologist wanted to put a pacemaker in but we refused to have it done. It may have increased his life by a few months, but the general anesthesia and overnight stay in the hospital in his condition was impossible.
Quote: "I love the bit about asking that Garv move in with the doctor!" A couple of years ago, he was hospitalized with suspected pneumonia. He raised holy h***. I stayed with him one night until 3AM before he finally calmed down and went to sleep. He was in a two bed room (a private room wasn't available at the time) and the hospital has very strict rules about a person of the opposite sex staying in the room overnight. The next day his PCP visited and wanted him to stay another day for further testing. I told him okay, but *he* had to stay with him overnight!!!! He decided at that point to release him!!!
I intensely disliked his doctor, but at the time he was the only PCP in Arlington that would take original Medicare patients. He didn't like me either!!!!!!
My DH has reacted poorly to the Excelon patch, Namenda. and Aricept - all caused nausea, vomiting and subsequent weight loss. He is off of all AD meds now - no more nausea. Neurology appointment had to be postponed because of a fall causing a small, chip fracture. Perhaps one these medications will be restarted when we return to the doctor. Are they worth the side effects?
Generally speaking, those who have stomach problems with Aricept do better on the patch. Talk to the neuro - maybe the dosage needs to be adjusted.
As to your question - are they worth the side effects? Their purpose is to stabilize and slow down progression. Everyone is different. I definitely believe that the Aricept and Namenda have slowed Sid's progression. He doesn't have any side effects from them.
my wife did not tolerate Aricept - vomited for the first time since I have known her. Namenda was OK, as was Razadyne. We have now stopped the Razadyne and she is on the Exelon patch with no problems. So, she is tolerating the medicines well, but are they helping? The only way to tell would be to stop them, which I am not willing to do, since, if she gets worse and I restart the meds, she won't get back to where she was.
Thank you so much for your replies. Not only is the information appreciated, but just knowing that there is someone out there who is listening and understands means so much.
When my hb was put on galantamine, I was concerned. He had GERDS years ago and had surgery for it about 10 years ago. Because they say to tell the doctor if there has been reflux problems, I told the neurologist (both the one in Vegas and Portland) and his PCP. Since they upped the dosage to 16mg he has been having acid problems. I give him an acid reducer in the mornings. He has an appointment coming up with his PCP soon and I will bring this up. We definitely do not need a repeat of the past - he had 6 ulcers on his esophagus.
Please would like some input.....my hb was diagnosed MCI progessing to AD and start on Aricept 5mg 2 weeks ago. I have been giving it in the am because of the dream thing and he sleeps well and didn't want that disrupted. He has experienced some nausea in the am and loss of appetite, and indigestion and lots of belching in the pm, which is new for him. But yesterday am he was nauseous and vomited once. I don't know if I should try giving it at 5pm with his other meds or call neuro or just cont. this way a few more days. He is 72, diabetic and CLL, he only weighed 163 yesterday, fully clothed in sweats, I don't want him to lose too much weight. Please appreciate any and all advice. Thanks
Andy, I would start with the neuro before changing anything around....especially with the other health issues. You husband may be one of those who can't tolerate the aricept but there are other similar drugs that could be tried. Good luck....
Aricept is one of the hardest to tolerate from all I have read. Aricept and Galantamine cause the stomach to produce more stomach acid than normal. My hb is on galantamine and I had to give him an antacid for almost a year. I finally stopped them and he doesn't seem to be having the problem. He always takes it after eating. There are some here I think who were put on the Exelon patch - I know my SIL was because she could not tolerate Aricept.
Definitely contact his doctor and let him/her know the reaction. There are other drugs to try.
My wife vomited for the first time since I have known her after taking Aricept. She tolerated Razadyne OK, and is now on Exelon Patch with no problem (except maybe that is the cause of her loose stools). I agree you should contact your doctor and get another medicine.
My husband, after a few weeks of being on Namenda and Aricept together, became quite agitated. He is off the Aricept now, but is on Namenda and Seroquel.
Thank you all for your responses. Yesterday was a better day for hb, but I got feeling a little "funky". Thinking we may have just picked up a bug. Going to see how he feels this morning and go from there. I really hope it isn't from the Aricept, I have a hard time convincing him to see a doctor or take medication. We shall see.....
There is a stomach bug going around, so it could have been that. I hope it clears up but if not, do not hesitate to call the doctor. He should be able to change it without going in. Since he is already taking it, you just change the pill he takes in the morning.
I really like the idea of telling the MD to live with what we do.Our Neurologist is a fine diagnostician, but he doesn't want to increase the seroquel dosage, so my DH won't be a zombie.Reducing the Sinemet helped a little, but not enough.He still wants to sell our AZ house, and stay in NY where he won't have to see my children ever again.He wants to invest the money for HIS children, a situation we hammered out years ago, and is set forth in our wills to both of our satisfactions before this change in him. This hostility erupts like Mount St. Helens, totally unexpectedly, and always in company, embarrassing me in front of folks who are not yet close friends, or in front of one of my sweet children, who are available to provide respite for me, if he would let them. Now, he wants only my company, 24/7. Maybe I will ask to reduce the Namenda. He never has had a bad reaction to it, though.But his on task behavior has decreased markedly these past 2 months.This dementia diagnosis is so hard to titrate properly with meds, and the personality issues are so hard to take. Phyllis9
Phyllis9 please try not to let yourself become isolated. That will happen if you only react to your husband's hostility. You need to be proactive and the one who calls the shots.
Phyllis, you are right that these personality issues are really hard to deal with. But Bluedaze's comment is right on: don't let him isolate you. Make sure the neurologist knows (in detail) what you are going through. Write out some of the conversations (rages) word for word and email them to him. That did the trick with mine. I got the Risperdal prescription the next day. Maybe better a LITTLE more "zombyish" than ongoing destructive hostility.
thanx, bluedaze and JeanetteB. I am now looking to hire a man to keep him company for a few hours a week, so I can get out,, maybe to a weight watcher's meeting. I have gained weight, eating alone here at night and not having a routine mealtime anymore.I have the rx for more seroquel, but I feel guilty giving it to him.Maybe I'll try one more. But he slept a lot today anyway. Some days are like that.I am having a hard time. I so appreciate your support.Phyllis9